tag:blogger.com,1999:blog-56139578682778635782024-02-22T03:02:39.344-08:00Postcards From CohenLindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.comBlogger46125tag:blogger.com,1999:blog-5613957868277863578.post-18251417760333164462019-05-13T10:23:00.000-07:002019-05-13T10:23:57.382-07:00Best Mother's Day Ever: We have a G-tube Graduate!<!--[if gte mso 9]><xml>
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It’s been a part of him for as long as I can remember. Up until he was 12 days old, I was able to hold him belly to belly without worrying if I was going to hurt him. There was no medical device interfering with our bonding time. There weren't many tubes or chords either. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbxGGlmsGST7O94w1c9AunrLEC56ThxEgxg7TycwUG43DKUtDNWEWHY8DM_FuWm6ERpEPqHbhvcZmj2wCIAwE5IKsV7Qnp1p9aePWqChxl9qv3xnW3yfAgg1RhVd4XJkDDW-_YMxhDe1Y/s1600/IMG_1854.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbxGGlmsGST7O94w1c9AunrLEC56ThxEgxg7TycwUG43DKUtDNWEWHY8DM_FuWm6ERpEPqHbhvcZmj2wCIAwE5IKsV7Qnp1p9aePWqChxl9qv3xnW3yfAgg1RhVd4XJkDDW-_YMxhDe1Y/s320/IMG_1854.JPG" width="320" /></a></div>
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This image is one of the final days holding him before he had his g-tube surgery. At the time he had an NG down his nose to supply nutrients to him. </div>
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That all changed on day 12. Looking and thinking back I was so scared and traumatized of Cohen getting a feeding tube, because to me it was like bringing a part of the hospital home with us. It wasn't natural and it definitely didn't look typical. I was so resistant to this little 16 french 1.0 button that was put into his belly. But after looking at my son with this as part of his body for 5 years, it has blended into the background. It is him in all aspects, and it has helped keep him alive which I'll be eternally grateful for. <o:p></o:p></div>
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This is Cohen at 1.5 years old with some teething toys at his high chair. From the beginning we would treat him like any typical kid, providing him with typical feeding experiences. </div>
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It has consumed me for almost 4 years, constantly worrying. As a parent, this has been the hardest thing I’ve ever had to do in my entire life. Often it would consume me daily with worries and hopes and fears and sadness. We would often take one step forward followed by 4 steps backward. <span style="font-size: 12pt;">When he was little it was worrying about whether or not he was going to pull it out, when the next time he was going to vomit all over my house, and if he would ever be able to eat orally by mouth.</span><span style="font-size: 12pt;"> </span><span style="font-size: 12pt;">Then as he grew, the worries changed. He began taking purees around almost 2 years old.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZG1Pw0sOOQIOKVgw_62Gg_46vQQT-T9u5Gu8t1Ea-FPqlHR31MTU0DIADGSvVGf9Vc_WmR7BvV2y3dg3AXTGyz0m6Sq9S9C7m5N1cFp0IQjBqc1njS4qVkSfvTmTX24ovTpWN53oOUZc/s1600/IMG_3452.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZG1Pw0sOOQIOKVgw_62Gg_46vQQT-T9u5Gu8t1Ea-FPqlHR31MTU0DIADGSvVGf9Vc_WmR7BvV2y3dg3AXTGyz0m6Sq9S9C7m5N1cFp0IQjBqc1njS4qVkSfvTmTX24ovTpWN53oOUZc/s320/IMG_3452.JPG" width="240" /></a></div>
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Cohen is enjoying some delicious purees. Yummmmm!</div>
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<span style="font-size: 12pt;">The worries turned into: Was he going to choke? </span><span style="font-size: 12pt;">Was he getting enough calories? </span><span style="font-size: 12pt;"> Around 2.5 years old we transitioned him to a blended diet through his g-tube. Up until this point he was receiving baby formula to provide calories for him. A blended diet is a </span><span style="font-size: 12pt;">diet that is real, whole food blended and syringed to him through his feeding tube.</span><span style="font-size: 12pt;"> </span><span style="font-size: 12pt;">My worries turned into acting as if I were his nutritionist. Was he getting enough fruits? Carbs? Nutrients?</span><span style="font-size: 12pt;"> </span></div>
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<span style="font-size: 12pt;">And by the age of 3.5 he finally was showing many more signs to eat and be interested in food.</span><span style="font-size: 12pt;"> </span><span style="font-size: 12pt;">His list of foods began to lengthen and with feeding therapy weekly, I was trying my best to make sure he received balanced meals. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY8GF8nHC-8648W2wdRXGJrSIS9cgG7D1tOKbHaOuLmmnKEuPGM6uJy6QwdRUNQukUM-EfldCgLvdtE5Y0DXYNmgYB_zNh7S2134hU_dvZO3R8TV3soCHVxkpw6YjxIC8Fk6C9VYDb7pc/s1600/IMG_1880.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY8GF8nHC-8648W2wdRXGJrSIS9cgG7D1tOKbHaOuLmmnKEuPGM6uJy6QwdRUNQukUM-EfldCgLvdtE5Y0DXYNmgYB_zNh7S2134hU_dvZO3R8TV3soCHVxkpw6YjxIC8Fk6C9VYDb7pc/s320/IMG_1880.JPG" width="240" /></a></div>
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<span style="font-size: 12pt;">A picture of him receiving therapy in our home. He would be visited weekly by his in home therapists and we would also work on weekly feeding therapy up at Stanford as well. </span></div>
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<span style="font-size: 12pt;">In mid-2018 I was able to transition Cohen off of his feeding tube, receiving no calories through it. It was evident that his chewing abilities had improved, his love for food had increased, and he was generally a decent oral eater. This picture below shows him eating his first hamburger (and yes it's in the car). I love this picture and wanted to share it because it truly represents our life. Cohen is an oral eater, but mostly on his terms even today. He is a grazer and often eats on the go. Whether that be in the car, or in line for a doctor's appointment. I never leave the house without a cooler full of a variety of foods so that there is never an opportunity for him to be hungry. </span></div>
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In order to usually have the doctor's approval to remove a feeding tube, children or adults need to prove themselves for generally a 6 month period of time, sometimes shorter, sometimes longer. What does that mean? Being able to hold his own through sickness, surgeries, and other ups and downs of daily life, Cohen would need to prove he did not need to use the tube during these occasions. And he did just that! He had multiple colds in late 2018 and then in 2019 had a tonsillectomy. I was convinced he would need to use the tube, even if to administer medications. But because he had been weaned off it since May 2018, he was confused and honestly scared of the feeding tube supplies when I brought them out. An hour after surgery in the hospital he told the nurses and I that he would drink all of his medications. And by two hours post-op he was scarfing down scrambled eggs and pancakes. To no surprise to us, Cohen was once again showing that he was a badass! </div>
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He had proved himself and at our GI appointment last week I received the incredible news that it was time. Time to take it out and let him be an oral eater. Yes we would most likely still rest uneasy some days that he didn't take in enough calories or became sick that we wouldn't have our safety net "tube" to fall back on. But he had proved himself and was ready to graduate. </div>
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When we took it out two nights ago, the entire family was chanting, “Bye, bye tube!” My daughter Isla seemed to be the happiest. I know she didn’t understand to the caliber of what this moment represented for us and for him, but she couldn’t have been more proud of her brother. He walked over to throw it away in the garbage and suddenly hesitated. He began to cry. He didn’t want to throw the tube away. “I want my tube back,” he said. This reaction wasn’t something that crossed my mind anticipating this moment for so long. I thought it would be a celebration like none other. This wasn’t happening to me, but to him. Of course he would be attached to something that he had always known to be part of his little body. That plastic button often got in the way, and he would sometimes utter, “Watch out for my tube” if someone would brush up against his belly. It made it challenging for him to do easy things like go belly down on a slide, or be able to give strong hugs. <o:p></o:p></div>
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So as we were holding him and trying to wipe away his tears, we shared and brainstormed as a family all of the things he could do now with his tube removed. Here is just a small list of what we came up with:<o:p></o:p></div>
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-Go down on my belly on the slide.<o:p></o:p></div>
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-Wrestle with my sister<o:p></o:p></div>
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-Swing on my belly<o:p></o:p></div>
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-Roll down the stairs or grassy hill</div>
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It's crazy to think about how long this journey has been for him, but it just feels like yesterday that the nurses at Ann and Robert H. Lurie Children's Hospital in Chicago were training Ryan and I on how to care for our newborn baby boy. This process and journey didn't come easy and took an entire tribe of people to make it a successful one. </div>
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<span style="font-family: "calibri" , sans-serif; font-size: 16px;">Thank you to everyone who has helped make this possible.</span><span style="font-family: "calibri" , sans-serif; font-size: 16px;"> </span><span style="font-family: "calibri" , sans-serif; font-size: 16px;">All of his in-home therapists, his school therapists, his collection of nurses, his feeding therapists now, both of his grandmas for getting trained in feeding him when my husband and I had to leave.</span><span style="font-family: "calibri" , sans-serif; font-size: 16px;"> </span><span style="font-family: "calibri" , sans-serif; font-size: 16px;">Thank you to Kelli, his first nanny who learned for a hot minute how to feed him.</span><span style="font-family: "calibri" , sans-serif; font-size: 16px;"> </span><span style="font-family: "calibri" , sans-serif; font-size: 16px;">She gave it her all. We are so proud of our little man. For so many families that at one point in time have to learn and care for a child with a feeding struggle, this post is for you. I hope it brings hope to you to know that you aren't alone and that you are rockstar parents! Your child may graduate sooner than later, or maybe they will be feeding tube dependent for life. But I can honestly say that I'm so thankful Cohen had a feeding tube because it kept him healthy and alive for these past years. </span><br />
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<a href="https://youtu.be/8mfm_Icv2Vw">https://youtu.be/8mfm_Icv2Vw</a></div>
Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-3749821379340821642017-11-29T10:56:00.001-08:002017-11-29T10:56:46.671-08:00A Whole New World<div style="background-color: white; color: #222222; font-family: roboto, arial, sans-serif; font-size: small; line-height: 1.24; margin-bottom: 13px;">
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<i>"A whole new world</i></div>
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<i>A new fantastic point of view</i></div>
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<i><i>No one to tell us no</i></i></div>
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<i>Or where to go</i></div>
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<i>Or say we're only dreaming</i></div>
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<i>A whole new world</i></div>
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<i>A dazzling place I never knew</i></div>
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<i>But when I'm way up here</i></div>
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<i>It's crystal clear</i></div>
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<i>That now I'm in a whole new world with you"</i></div>
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Yes, these are the lyrics in the Disney Aladdin movie. But although these lyrics may be about two lovers, for me they represent how I see Cohen these days. It's a new world in so many ways and a grown up boy accomplishing so much!</div>
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It has been over a year since my last blog post. Time continues to fly by in my life, and it's hard to take time to reflect on the past and all of the memories and milestones that have occurred. But it's so incredible to see his progress when I do find the time.<br />
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A year ago Cohen had just started at a private preschool. His home therapists wanted to get him started in a school setting and see how he did in preparation for him starting his local preschool placement. He was due for his first IEP meeting. An IEP is an Individualized Education Plan. Most children walk into school, teachers assess them and meet them where they are academically and socially. Kids can need an IEP for a variety of reasons. For Cohen it is something that he qualified for very easily with all of his needs. After much debate and three intense meetings with the school staff at his local preschool, we were finally able to get him in the perfect classroom setting. He would be placed in a preschool primarily centered around teaching children with special needs. The meetings, the fights, the refusal to sign his IEP, on our part, was primarily around his placement. We had toured the state preschool classroom prior to our meetings and thought it was the perfect classroom for Cohen. There were therapists on site at the school and a daily nurse. He would be surrounded by typically developing kids his age as well as children that had some major needs like himself. A few other children in the classroom had feeding tubes which was a definite plus for us. We really wanted Cohen to have friends that were similar to him. Ones that may struggle with the same thing...eating! But the school continued to push back claiming he had missed the birthday cut off for that placement, but they could place him in a special day class. Yes I know that the day may come when Cohen cannot be mainstreamed in a class with typical peers. But for now, he's right where he needs to be and we demanded he be put in the least restrictive environment with the most intensive program possible. So far we have seen nothing but amazing things. He has grown so much as you will read and is starting to come home talking about his favorite new friends.<br />
Here he is on his first day of school with big sis!<br />
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Now looking back on the fights we had with the principal, the tears, the endless pushing...we won! Cohen started in his new state preschool classroom in January and it has been nothing but watching him soar. He has had his fair share of illnesses though, most that kept him out of the hospital. Often when he gets a cold, he still manages to hold onto it for a minimum of 2+ weeks. After 5 ear ruptures/infections within a 4 month span, we decided to put in ear tubes again to help. At the same surgery he also had a small surgery for an Orchiopexy to bring down one of his testicles. Both surgeries went well and he recovered easily. He was able to snag a pair of purple hospital gown pants that he now refers to as his "ha ha" pants. Yes, sounds confusing, but he loves old school Batman and Joker cartoons and the Joker character wears that color. He can't yet say "Joker" so "ha ha" refers to his creepy laugh.<br />
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This year has been nothing but Cohen racing and soaring to reach his goals. His speech is developing and it's getting easier for others to understand what he says. Last year we were happy to get 1-2 words from him. Now it is not uncommon for you to hear him utter 4 word phrases. They won't be clearly articulated but with a little prompting and repetition, we are having conversations with our boy!<br />
Here is a sampling of things he will say often around the house:<br />
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- Mommy ch'rios bowl peese (Mommy cheerios in a bowl please)<br />
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- I don like it<br />
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- Miss Dylan ( to describe different things he misses, mostly missing Disneyland...those Disney withdrawls are intense)<br />
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-Goo Nigh E'body (Good night everybody before bedtime)<br />
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-Iya Bean (referring to sister)<br />
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Physically, he is running all over the house, with definite help from his AFO (Ankle Foot Orthosis) braces. This past Spring, he was able to join a coed softball league with his big sister and crushed his fellow teammates with his batting average. Cohen is able to hit a ball from an overhanded pitch from Ryan. This is truly amazing to see from such a little man that already struggles with his balance, core strength, and coordination. He may have been half the size of all of his teammates, but he was not afraid to get up there and tackle a sport played with 6 year olds.<br />
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His eating has also shown great progress. Last year at this time he was still getting 4 feeds/day and eating sometimes 150 calories. Now there are more days than not where he is eating up to 400 calories/day. We have decreased his feeds to 3 times/day. This has been the biggest accomplishment and relief to Ryan and I. Up until this point, the past 4 years our bedtime has been dictated by his feeding schedule. Because he would need a feed every 4 hours, if the schedule was pushed back for any reason, it would force us to have to stay up late to get his last night feed in while he was asleep. The sense of relief of being able to jump into bed at 8:00pm if we are tired is a foreign feeling to us, but we aren't complaining. Cohen still attends feeding therapy weekly to help him take in more calories, try new textures, and increase his variety of foods. His new favorite foods tend to be not as healthy as before, but very typical for his age. Chicken nuggets, hot dogs, pizza, and ice cream are some of his favorites. All things I'll never say NO to because......HE'S EATING THEM!!!<br />
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It is still a daily battle, but something that I don't think is impossible anymore. School has also helped him to see typical peers eating and that food is not the enemy. This Thanksgiving he participated in the entire meal, watching his cousin and aunts and uncles eat....and then joining in the fun! He has also improved by weaning off some of his medications. He is now off both of his reflux meds. This will cut-down on both time giving them to him as well as financial costs!<br />
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But with all these amazing accomplishments, 22q sometimes reminds us that it's here to stay. It's not something that lies dormant forever, allowing you to put your guard down. Just when you do, it comes back and bites you in the a#$. On July 25 we were shocked to witness Cohen's first seizure. It was terrible. The longest however many minutes I had to endure using all my strength to hold Cohen up as I pulled him out of the bathtub. He had a stomach bug a few days prior and was not acting himself. Throughout the course of the day he became progressively disoriented. I couldn't scream hard enough to grab Ryan's attention to come into the bathroom. Funny thing, is in the past when I've screamed like that it was to help abandon ship when Cohen had pooped in the tub. Isla saw everything but recovered sooner than we did. After the ambulance ride and lengthy check-up it was determined that it was caused by possible dehydration from his illness. Relief knowing this wouldn't be our new normal was all we wanted to hear.<br />
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For a joint birthday gift, we took Cohen and his big sis to Disneyland. Anticipating the right time to take him without having to deal with his medicine and feeding schedule have always been an issue. And there was always the chance he would get really sick. It was a miracle that everyone was well and we couldn't have asked for a more magical first Disney experience. HIs eyes lit up meeting Spiderman, Captain America, and Thor at California Adventure and seeing him squeeze Winnie the Pooh was almost too much to bear. But probably the most magical moment in my eyes was watching my kids at the night parade. He was sitting there experiencing the beauty and magic of Disney free of cords, free of therapists and doctors poking and prodding him. He was in true kid form, holding his Mickey bubble blower and without a care in the world. Happy tears were shed....lots of them. The kids are still missing Disney and talk about it very often.<br />
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As an almost 4 year old, Cohen is becoming a typical 4 year old. He's stubborn, headstrong, and very independent. He still requests holding various toys/action figures with him in the house, to the car, and at bedtime....but his anxiety is usually around new experiences/environments and not at home.<br />
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And today we celebrate his 4th birthday. I am holding back tears writing those words...happy tears, because every year hat goes by is another year of strength and accomplishment. No one can tell him no or way to go or say he's only dreaming. He may have 22q, but so far it's not stopping him!<br />
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Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-34169162389770914522016-10-16T21:09:00.001-07:002016-10-16T21:13:53.458-07:00Preschool and Lots of Updates!Apologies right from the get-go of how little I have posted. The lack of posts have been from the amount of successes we have been busy celebrating with Cohen. It's been a year since we have moved to California and the amount of leaps and bounds this little man has made is truly incredible and inspiring. <br />
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A year ago he had just a few words, but mostly in sign. Now he is saying lots of two-word phrases, often verbally but sometimes including signs. He can identify most letters and sounds, and even plays Scrabble Junior! He knows most of his colors, is starting to "mumble" count, and is saying more spontaneous words than ever before. </div>
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A year ago he was crawling on the floor eager to walk, but lacked the core stability to walk. Now he is practically running, still with the occasional face plants, but seeing him upright is amazing. He has mastered hitting the ball off the tee and has found a love for baseball. It's great exercise to improve the rotation in his trunk and his tone. </div>
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A year ago he was on 4 feeds "tube meals"/day that completely supplied his nutritional intake. He would "taste" foods, but besides a few sips of milk or water/day we were thankful for his feeding tube because it has kept Cohen alive. Today, he has finally overcome his fear to swallow foods! He still is on 4 feeds/day but we are starting the weaning process!! For those of you that aren't familiar with feeding tubes, there's a slow process of teaching and learning to eat full caloric intake before the feeding tube can be removed. A little starvation and an additional medicine that helps stimulate an appetite, Periactin, help him learn that food is good and helps you feel full. This is a feeling Cohen has never really experienced before and it's amazing watching him open his mouth for food that he once saw as the enemy. He enjoys eating things like crackers, chocolate milk, french fries, milkshakes, cubes of cheese and avocado, and many others. On days when he "shows up to eat" he is able to eat 100-150calories/980 calories he needs to grow. This seems minimal, but coming from the days of sucking on foods and spitting out, this is a huge feat! He is still far from where he needs to be before he can be tube-free, but it's the little progress we see each day that is uplifting. Although he has his good days and bad days, it's amazing to think that 3 years ago he was on a feeding pump 15 hours/day. Just today he ate an entire Yoplait Gogurt! It's the little things. This success is by far my most happy moment because for once I can see the light at the end of the tunnel. </div>
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Cohen turns 3 in just a little over a month and the transition from his home therapy program to a preschool program is happening! Cohen will likely be attending two different preschools. The first is a parent participation preschool in our neighborhood that for the most part has typical and healthy children that attend along with a great ratio of parent volunteers. He is completely immersed in the program and has no restrictions on what he can or cannot do. He is able to see and hear great models of language that should only help to improve his speech. His favorite thing to do at school is play t-ball, of course. </div>
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He is learning to stay seated during circle time but that's still a bit of a struggle, unless of course it's sharing time. He recently had the chance to share something from home and we decided to take "Emily" a toy train. We practiced all morning on our drive into school as I signed green and train in my rear view mirror and he would practice saying "een" for green and "oooh oooh" for choo choo. When it was his turn to share, I was convinced he would either refuse to go up to the chair or need me to be there for support. But he didn't need me. I saw something in him that told me, he's going to be ok. He may be behind, but he follows his own beat and his own path. He sat up proudly in the chair and the teacher asked him what he brought for sharing. "ahhhhh," he responded. This is a standard answer of his at first, which usually prompts us to redirect him so he can try to say the proper word. He looked at me and I did just what I had done in the car on the way in. By giving him the green and train sign he was able to say "een oooh oohhh." The teacher then asked what his train's name was and he again gazed in my direction. "Emily," I said and he responded to the teacher, "Em-eee." Tears flooded my eyes and it took all of me to push them back in. My biggest fear for Cohen at this point in his life is how he would do being integrated into a classroom with typical children and how he would be successful when language is such a barrier for him right now. He showed me that I don't need to worry anymore about him. He will be fine. It's not going to be easy, it will be an uphill battle at times. But it will be a journey that he will take at his pace and his stride.</div>
Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-38241401813355661212015-11-28T21:18:00.002-08:002015-11-29T06:55:12.474-08:00WE have survived two years!!This post means more to me than I thought it would. Our little man is two and honestly there were moments in the past where I thought he wouldn't live to see this day! At his lowest point on the ventilator in the PICU, I remember the nurse pushing the BLUE BUTTON, the look of worry on her face was not settling to me and I thought at that moment he would be gone forever. Or the 5 different times the nurses took him back and he went under anesthesia for various procedures and surgeries. Looking back on all of the ups and downs, it is not hard to have a huge smile, a fluttery heart, and be speechless. I have no words to describe the joy that this little boy has brought into our lives. He is a warrior, a champion, a superhero, a fighter, a comedian, a smarty pants, a music lover, determined mini-man that is always pushing himself to the next level and will continue to always need to do that throughout his life. <br />
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We are often asked when will he "grow out of this." The awareness just isn't always there and the misconception that this is a thing that can be fixed and fixed easily sometimes is rather upsetting. Cohen is meeting milestone after milestone but at a slower pace, his own pace. Progress is power and he has a lot of it! But he will continue to struggle throughout his life, whether it be medically, socially, or educationally. Call me a Debbie Downer or a pessimist, but I've become a realist in all of this. I can't brush off the struggles I know that may be in his future. I can just plan and hope that his past was his worst and that his future can only be brighter. There isn't a cure for 22q and probably never will be. It is a chromosomal disorder that affects all areas of the body at all different intensities. But with that being said, there are always accomplishments to celebrate!!<br />
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It has been over 5 months since my last post and Cohen has made leaps and bounds! His language has EXPLODED and now has more signs than I can count! He is extremely verbal and can shake his head yes and no for what he wants, is requesting things to play with by either signing or nodding, and even tells me when he doesn't like a song on the radio by saying "MORE" meaning "NEXT SONG MOM!" He has also begun to show more interest in eating and is requesting particular foods at the refrigerator. This is huge progress for a child that doesn't even know hunger. It will be the slowest process to get him rid of his feeding tube, but it is something that without it, he wouldn't be here. As scared as I was of him having his feeding tube, it has made him the stronger and fearless child he is today. Without it, he wouldn't be progressing and reaching all of these milestones. <br />
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And this just happened two days ago, right before his birthday! It is only a matter of time before he will be running around and we will be sprinting trying to catch up with him.<br />
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The other day a good friend asked me, "So how are YOU? How have YOU been handling the past two years?" I don't think I've actually ever thought about that nor had the time to do so. I've been treading water trying to stay afloat. Whether it be trying to give my undivided attention to my eldest child and make sure that she feels special even with everything going on, to the intense care that Cohen needs, I have yet to reflect on myself and what I have been through. These past two years have been intense in so many ways. Cohen has overcome major setbacks, I have started a new career in search of something flexible to be able to stay at home with him, and we have recently moved back to California to be closer to family support and nice weather :) We have had a whirlwind 3 months getting situated here, fighting for therapy in a new state, and making sure that both Cohen and Isla are comfortable. But even these huge transitions and changes are nothing compared to where we have come from and what we have gone through. Yes, I know I wasn't the one hooked up to all of the wires and monitors, or the one that has been vomiting every day for the past year and a half, but I have been there through it all! I, as the mother, will never forget the things my little baby boy went through and am thankful he will never remember those times. <br />
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The 2's are going to be wonderful for Cohen! I'm ready to see what he will accomplish over the next year and know that it won't be disappointing. His first year was full of beeps, cords, surgeries, and scars. Now his world is full of wonder, excitement, and curiosity and I hope it can stay that way!<br />
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Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-692859720178699512015-06-08T20:16:00.002-07:002015-06-08T20:18:43.212-07:00Inchstones....our milestones!<div class="separator" style="clear: both; text-align: center;">
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The weather is warming up, we are starting to get healthier and free of colds, and our little man is hitting inch-stone after inch-stone. <br />
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Inch-stones to us are what milestones are to healthy children. Small little inches forward and often a few inches backward, Cohen takes to get to the larger milestones that are "age appropriate." Cohen beats to his own drum and crosses events/successes off his list at his own pace, as typical 22q children do. This past month, he has had some amazing accomplishments including finally being able to apply the sign language we have been working so hard on over the last few months. He is so proud now every time he makes a sign and is happy to be able to communicate with us. </div>
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Cohen currently can sign these words:</div>
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-head/hat</div>
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-ball</div>
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-milk</div>
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-sky</div>
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-car</div>
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-stop</div>
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-daddy</div>
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He can also understand these signs:</div>
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-music</div>
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-up</div>
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-kitty</div>
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-water</div>
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-cracker</div>
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-all done</div>
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-bath</div>
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-mommy</div>
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-Isla/sister</div>
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Here is Cohen signing head/hat while watching a baby signing time video.</div>
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And he has officially said his first word: MILK....Mommy is a close second but still not consistent quite yet!</div>
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He is able to follow simple commands like: give mommy the ball, or put the book on top! He has mastered holding books in the proper orientation and is taking interest now in puzzles. All of these behaviors typical for a child much younger, though it doesn't matter to Cohen or to us because that's all he knows and he smiles through it all!</div>
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Just today for the first time, Cohen took his first crawling scoots across our floor trying to reach a favorite toy, Elmo! For once we are crying tears of joy and not tears of worry or anguish! He still hasn't quite figured out his motor plan but will and once that happens, we are all in for trouble....especially his older sister Isla. For the past 18 months she has been a sibling to a "baby" who has kept to himself. Now that he is mobile, I'm anticipating the sibling rivalry to finally commence!</div>
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While waiting and anticipating all of these inch-stones, we have also become very involved in the 22Q community. In May I was the 22q at the Zoo coordinator for our local zoo. This is an international event that helps spread awareness for 22Q and also allows families to get together and share their experiences. We had about 10 other families at our local zoo. It was amazing to see that Cohen still remains one of the youngest at these outings and is is very rare to be diagnosed in utero. </div>
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Just last week I was asked by the Dempster Family Foundation to be interviewed to take part in their PSA that they are filming as a means to show the faces of 22q and the story behind the families that are effected. It was amazing to take part in this interview, share Cohen's journey, and my insight on how lucky I feel we were to get diagnosed so early on. It is NOT a RARE DISORDER, but a RARELY DIAGNOSED ONE! </div>
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Just last weekend, we attended the 22Q Mystery Bus Tour. </div>
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This is another event the Dempster Family Foundation has created in trying raise awareness, while on the GO! They travel all over the country with this bus so that the everyday traffic/citizens can see the bright colors and hopefully research more about what 22Q is. It also gives us families another opportunity to network. It seems like we often meet up at different events, but to me it seems there is never enough time to learn more about another family's experiences or their child's struggles. I could talk to these parents forever, comparing notes on doctors and asking them questions about their experiences if their child is older. I want to pick their brain. I often find myself scoping out the older children, not in a judging way, but looking to understand what I have in our future and what I could expect with Cohen when he's 7, 10, or 19 years old. It's always a double-edge sword when we attend these events. Though it is helpful to network with other 22q families and be able to see the huge successes of children older than Cohen, it's sometimes also overwhelming to see what hurtles we may face as he grows. </div>
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As a way to continue my mission in spreading awareness for my son and the rest of the 22q community, I am doing so through my new business. Back in August of 2014 after being home with Cohen for 5 months, I started my own business as a merchandiser for a jewelry company called Chloe & Isabel. It was the perfect opportunity for me for a variety of reasons. I'm able to stay home with the kids and care for Cohen while having an online store as well as host in-home pop ups during the weekends and evenings. It has allowed me to feel human again, meet some amazing women, and engage with new people to share Cohen's story with. My goal is that each time someone purchases from my online boutique I'm able to share with them about 22q and hopefully when they are complimented on their new purchase, they can pay spread awareness as well. </div>
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You can visit my online boutique here: https://www.chloeandisabel.com/boutique/lindseygarcia<br />
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Ryan continues to work partnering with the Dempster Family Foundation to help spread awareness for his project: State of Kind. He currently has a few different states in the works, so stay tuned! You can stay up-to-date on his mission here: http://www.366randomacts.org Also with the current NHL Finals, he has organized a fundraising event that will allow friends/family to donate based on the Blackhawks success! Learn how you can participate here: <a data-reactid=".5n.$mid=11433819749667=268ccd68864ab521001.2:0.0.0.0.0.0.$range0:0" href="https://www.facebook.com/366RandomActsOfKindness/photos/a.382006208482814.111623.354778471205588/1142804445736316/?type=1&__mref=message_bubble" style="background-color: #f6f7f8; color: #3b5998; cursor: pointer; font-family: helvetica, arial, 'lucida grande', sans-serif; font-size: 12px; line-height: 15.3599996566772px; text-decoration: none; white-space: pre-wrap;" target="_blank">https://www.facebook.com/366RandomActsOfKindness/photos/a.382006208482814.111623.354778471205588/1142804445736316/?type=1&theater</a></div>
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Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-32780956611065781932015-04-11T17:57:00.000-07:002015-04-11T17:57:00.612-07:00I'm NOT a doctor!! I'm a mother, a nurse, an advocate, a caregiver, a doctor, and oh did I say doctor?<br />
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One of the most challenging obstacles Ryan and I have had to face and accept is that 22Q and it's many quirks is still a mystery to most. When finding out Cohen had 22Q in utero, we immediately met with a geneticist who explained to us more about his genetic disorder and "typical" things we could expect to face along the way: needing open heart surgery, feeding tube support, learning delays, speech delays, and the list goes on and on. All of these things although overwhelming at the time to both of us, to me seemed very clear cut! <br />
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He can't eat? We will have to have a feeding tube put in for a bit. <br />
He is delayed in his speech? We will have speech therapists work with him and get him the support he needs.<br />
His heart has a murmur? We can endure open heart surgery!<br />
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It never occurred to either of us that this would be a life filled with trial and error, guess and check, positive and negative results, and us advocating for our son about even the smallest things. Having family members in the medical field: both grandpa's were veterinarians, I knew that their job was tough trying to treat sick animals. I know that medicine is about the process of elimination (and no offense to any of our friends/family members who are in the medical field), but the process of elimination sometimes SUCKS! And sometimes that process is a very slow process, that can take days, weeks, months, and even years. Months and years taken away that you can never get back again. This admission is already going on over a week trying to get Cohen back to where he was before he got sick and brought him in last Sunday. I've already seen two of our neighbors be checked in and out in one night, and we are still here! It has been a guess and check system that has created daily vomits, weight loss, and sleepless days/nights trying to figure out the best way to treat him. <br />
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It's never comforting when the doctors are asking us, "What do you suggest we do? What plans do you have?" This isn't the first time we've heard these remarks. It's dejavu all over again and it has been for the past 5 days! Since when was my name changed to Dr. Garcia? Yes, I have become quite knowledgeable in the hospital setting and have accrued many new medical terms, but I'm not in the hospital trying to solve why Cohen is sick. I know that part of those questions stems from trying to work with families to help care for their sick children, but honestly it's disheartening having that weight on your shoulders. If we suggest something and it goes wrong, then we are stuck living with that decision. If we decide something and it works, then great and suddenly we have more medical expertise than the doc. It's a daily battle we fight to determine if what choices/changes we make will affect Cohen and his overall well-being. <br />
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I remember going to the doctor when I was little with my mom and just being in the office for a few minutes after he saw me, I felt better and my mom was relieved. I never truly have gotten that feeling in my stomach yet since Cohen has been born. Last year in the hospital many "band-aids" were put on him to mask the problems that would arise but we never fully got answers. Now after 6 days in the hospital Cohen has finally stopped vomiting (crossing my fingers as I write this post and a feed is going) and is starting to tolerate his feeds again. WHY? Because of ME (and Ryan :), oh and our little guardian angel Kimberly P :)<br />
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Kimberly is a mom that I have mentioned before in my posts long ago who I reached out to when I first learned of Cohen's diagnosis. Her son also has 22q and he has lived a similar path to some extent as Cohen, but also has had some other struggles along the way. Having a sick and complicated child, she is a wealth of knowledge to us and has been each time we are hospitalized. She always offers suggestions and things to ask the doctors at rounds. She is always positive through everything her and her little guy have been through and it's inspiring. I remember her exact words to me when we had our fist conversation on the phone last July. "YOU have to be Cohen's ADVOCATE!" I didn't quite get what those words meant at the time, but each time being in the hospital has taught me the power of those words. An advocate is someone who is brave, confident, relentless, a problem solver, and headstrong. I cried to her on the phone about how I felt lost again in this whole process, how it didn't seem like the doctors knew what was wrong with him. Cohen was again in the hospital and the one that was "puzzling" the doctors. There was never an easy fix for him, never a one night stay in the hospital. <br />
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On Friday morning before rounds when the attending doctor admitted she was "Puzzled" by him, I suggested a few things:<br />
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1. They could stick to our current feeding schedule and not push him so much, like we had suggested a few days ago at rounds. <br />
2. They could get the GI team (other docs that we haven't seen before) to weigh in on what they thought since our current GI is not an on-call one and hasn't been in to see him.<br />
3. We could consider increasing his calories and that would help decrease his quantity. <br />
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The attending GI docs stopped by on Friday morning and suggested a new plan that we be aggressive with Cohen's current motility medicine and try to knock this out by increasing the dosage from 0.25mls 3x/day to 0.6mls 4x/day! Thank god they didn't think he would have to return to the GJ tube since they felt his motility was completely out of whack due to being sick 3 times in the last 2 months. After those suggestions were made, it only took about one day and we have noticed a huge improvement in how much Cohen was vomiting. We went from having to clean him and the bed up 5-10x/day to NOT AT ALL! Not sure when we will get home (I don't even ask anymore), but as long as he continues down this path, I think we are headed in the right direction. <br />
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It's exhausting being an advocate for your child and going to bed every night researching and thinking about what the plan should be in the morning. Making a list of questions to ask during rounds and things to try is a ritual to us now. But no matter how exhausted we are, there is nothing that would make us stop advocating for him. He relies on us to do it! <br />
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<br />Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-27803351641412228482015-04-08T20:13:00.000-07:002015-04-08T20:13:30.782-07:00One day short of a year!It's April 8, 2015 and this post has been planned in my mind for over a few months now. April 7 is a day of great importance in the Garcia household these days, but as I'll explain, I wasn't able to write that post. <br />
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We have been counting down the days on our calendar to a very important holiday: 1 year out of the hospital! April 7, 2014 we were handed over our little warrior from the hands of the doctors and nurses one final time in hopes that this time he would remain healthy and at home. And he did. He has grown, gained weight, matured, and created so many memories in the walls of our home that we were blessed to have experienced. Isla has loved waking up every day to the squeal of her little brother and also being able to boss him around from time to time. Even through the past two months with two very intense upper respiratory illnesses, he has been a champ hanging in there and remaining out of the hospital. <br />
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We had a great Easter and spent it with my in-laws in the burbs. Cohen was in great spirits and dressed up for the occasion! <br />
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After returning back home, we started his first evening feed at 6pm and he went to sleep. Ryan and I were relaxing on the couch watching tv, and digesting our Easter meal. We ironically were talking about how in just 2 more days it would be 1 year that we had taken Cohen home from the hospital! Little did we know, that anniversary would be cut short by 2 days.<br />
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By 7 pm he woke up vomiting.....this is a norm for him lately and we didn't think too much of it. Usually if he's not tolerating a feed, he'll throw up and usually be ok, but this time was different. Every 15 minutes he was waking up and vomiting. GRAPHIC WARNING: The vomiting got to the point that he started having green neon bile. This was definitely a sign something was up. I kept waiting to see if it would stop so I could try to give him some pedialyte but he was a mess. We called his PED and "you have to take him in" rang through the phone into my ear. NO, this couldn't be happening. He couldn't just last two more days? He has been able to stay home before with a 106 fever, but because he's vomiting we have to? She said it would probably just be an overnight thing...but she apparently didn't recall the 17 weeks we spent in the hospital last year. The 17 weeks we were ripped apart as a family. I knew in my heart we had to go in too, but I also knew this probably wouldn't be a quick fix. Cohen was vomiting every 5 minutes at this point, I didn't feel safe driving him there by myself worrying if he would need me to help him. So we were able to get our amazing neighbor Kristen :) to come down and help us. She stayed at our place while Ryan drove me and dropped me off at the ER.<br />
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We arrived at the ER by 10:30pm. It was the barrage of questions again this time strictly about his gi issues and history. When was his gtube placed? Why was it changed to a gj tube? When did he start vomiting? How many times did it come out green? For once we were focusing on vomit and not a respiratory rate! I was a little relieved at that :) He was vomiting non-stop and every time I put down the "puke bowl" for more than a few minutes, it would start up again. They took an x-ray of his belly to rule out any obstruction since he has been vomiting green. They figured it may be a stomach flu and would put in an IV to give him anti-nausea meds and also start fluids to hopefully get him feeling better. It was terrible watching them try 3 different times to get an IV in him. Being a baby before, really has it's benefits as I can recall watching Cohen smile when he used to get IV's put in. Being as dehydrated as he was, his veins had shriveled up and it made his very small veins that much smaller. Finally they were able to get one in his foot and once they did he seemed to start feeling much better. He was so exhausted from all of the work he had done all evening and it being 12am, he passed out while sitting up in the hospital bed. We were finally admitted to the hospital on our favorite floor: 21 at 3:00am. Both of us exhausted, the nurses quickly took his vitals and we both went to sleep!<br />
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Being in the hospital this time around has its trade offs. Last time Cohen was in a hospital he was only 5 months old and now being a 16 month old it becomes rather challenging to entertain a little toddler in a hospital bed. He is limited at what he can do physically since he has an IV near his left ankle. He cannot put weight on it, so he pretty much moves from lying down, to pulling up to a sit over and over again. We have brought in some toys for him to play with and books to read but passing 3-4 hours of wakefulness in a hospital setting is much slower than doing it at home! He is also unable to leave his room because he is "isolation" due to the fact that he is vomiting. The perks of being a returning patient is everyone knows his name, our faces, and our story! We had visitors the first day we were here and every day since. It's those little 5 min windows of time where chatting with an old nurse or therapist helps make you feel like you are at home and not stuck in a 5x5 stark white room. Everyone has been commenting on "how big" he is since some of them haven't seen him since he was 5 months old. It's reassuring that even though he still struggles to gain weight and develop more slowly, he is making progress in the long run.<br />
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I stayed at the hospital through Monday afternoon when I switched out with Ryan to stay with Isla. Now that he's older it is not even an option about leaving him at the hospital. Watching him sit up in the hospital bed and looking at the door sends a pain right through my heart making it impossible to leave the little guy, even to run down the hall for a refill of my water mug. On Tuesday afternoon I was hit violently with a stomach bug.....trying to take care of Isla while sitting in the fetal position and running to/from the bathroom was draining! Ryan stayed at the hospital so I wouldn't infect Cohen. In the middle of the night Isla woke up with the same thing and by 5 am Ryan was already rushing home in a cab about to hurl. Luckily, my MIL Penny was able to take the day off work to stay in the hospital with our little guy. We all are nursing back to recovery as we speak. <br />
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So the focus of this stay is simply to hydrate him and get him to tolerate his feeds. We have taken a HUGE step back as far as his feeds go. At home he was able to tolerate 5 feeds/day each one 165mls over about an hour and a half. Now we are trying to get him to tolerate 8 feeds/day each one 90mls over an hour and a half. His GI doctor thinks that with the combination of being sick two different times already and then getting knocked down with this stomach flu, it has really taken a toll on his motility. His body is going to need some time to recuperate, much more time than the ordinary person and we need to take time with trying to gradually get him back to where he was before.<br />
PAUSE: PUKE BREAK :(<br />
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I just had to check on the little guy who has yet puked again. Not sure how much more of this he can take and I can take getting covered in vomit. The doctors want him to meet his caloric intake but at this point I'm asking to have a new plan. I understand trying to make sure he doesn't lose too much weight, but at the same time watching him vomit every feed doesn't seem to be worth it in the long run. I'm off to bed with heavy eyes and hopeful that tomorrow brings less vomit and more smiles from my little guy!<br />
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<br />Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-81130928433341886832015-02-10T19:40:00.002-08:002015-02-10T19:40:08.847-08:00TearsAs I write this I have tears dropping on my laptop! It's one of those nights. I'm sure many mommies can attest to having "a moment" when you really are feeling down on yourself for one reason or another. This night and day in particular has been getting to me. It's probably because I have been nursing my family back to health all weekend long and still Cohen remains sick. I'm frustrated, exhausted, and upset. Since last Thursday I've been taking care of everyone in this house except for myself. Ryan, Isla, and Cohen all had pretty bad colds, but Cohen really took a step back during this one. <br />
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Tonight I was planning to relax and hop on a national call for my jewelry company( C &I) with a glass of red wine in hand while Ryan was at the gym. Instead I spent over an hour trying to comfort Cohen and remind Isla to go back to sleep. Cohen has remained sick even when both Ryan and Isla have overcame their illness this past weekend. He is sensitive and fragile again and it reminds me all too much of the days we spent back in the hospital. I want to take away his pain, cough for him, and take on his fevers but I can't. It's so frustrating to watch your little guy go through so much day in and out while you remain healthy and feeling great. I know I need to be strong for him but tonight as I sat rocking him in the rocking chair, my mind started racing.<br />
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"What if this is going to be our lives forever?"<br />
"How can I divide my time and energy equally between both kids?"<br />
"How can we get through this?"<br />
"Why does he have to struggle so much and how is that justified?"<br />
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It's been over 14 months and though we have made huge gains and he's soared leaps and bounds in some areas, sometimes I find myself sulking over accomplishments he still hasn't made yet. Seeing babies his age talking, walking and eating, remind me that he just isn't there yet. Worry sets in and I find myself in a panic as to when these things will happen for him. He is coughing in my arms and ends up vomiting all of his food onto his sleep sack. This has been our routine for the past week. He has not been tolerating his food, coughs, has a runny nose, and at one point even had a 106.3 fever (yes I couldn't believe it myself and expected a hospital trip, but doc insisted we could get over this at home and we did!) Being as sensitive as he is, a normal cold is not your typical series of events. He can't really take any medicine via mouth yet, is uninterested in eating/drinking anything, and needs to sleep with oxygen still so it's that much harder to keep his nose clear to breath while congested. His motility seems to be jeopardized when he gets sick as well, which highly effects how much food he can tolerate through his feeding tube. A small little cold that Isla had is a much bigger concern for Cohen. <br />
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This is more of a venting post, but I just had to get it out there. This is for any momma who has had her moments, whether it was a toddler's tantrum, or not having time to shower or eat lunch. Everyone is entitled to having one of these moments every once in awhile and that was mine!<br />
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Good Night :)Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-80344085362829174142015-02-01T20:50:00.000-08:002015-02-01T20:50:21.402-08:00Three Miracles in One Week!As I cuddle up on my warm couch and watch the Super Bowl tonight not venturing out in this crazy blizzard we are having in Chicago, I think about three miracles that have happened this weekend. The first miracle happened almost a week ago. After Cohen was cleared passing the gastric emptying study we scheduled him to get his feeding tube switched from a gj to just a g tube. The last time he had a g tube was exactly a year ago when he went into the hospital via ambulance for turning blue on us in the house after choking. The doctors decided it would be safest for Cohen to get the gj tube at that point and it was placed February 27, 2014. Although it has been a means of nutrition for Cohen, transitioning him to just a g tube will help him transition to eat more food by mouth and in time not need his feeding tube. But this slow process does take time. He had it placed on Monday, no surgery, just an office visit and he did very well! We have been working at increasing his tolerance to a larger quantity to hopefully move him from 5 feeds/day to just 4 mimicking a typical feeding schedule for a child his age. It's quite uplifting to think that just 2 months ago Cohen was still eating through the night and some day (almost on the pump for about 15 hours/day). Now he is only attached for about 5 and it amazing to be able to sleep from 11pm-6am with uninterrupted sleep.<br />
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The second miracle happened over the weekend. For once as a family we had another dose of "normalcy." When I say normalcy I don't mean it in a negative way to people or families that don't get to experience "normalcy." I think of normalcy as something that people take for granted every day. Things that you do on a daily basis that are easy, effortless, and you wouldn't even think twice about doing an hour later. Normalcy is feeling part of the community you live in, the network of friends/family you have, and being an active participant. Though I love that Cohen is unique, eccentric, and special in so many ways and it has taught Ryan, Isla, and I to be thankful for the little things, transitioning from a normal way to our new normal has been rough on me. Being the perfectionist I am, it was so challenging this past year to take the stares from others, accept the fact that Cohen is going to do things at his own pace and his own way, and realize that some friendships might never understand the challenges our family faced last year. It took me this long to accept our new normal, as I've talked about in previous blogs. Cohen has made this new normal for our entire family and it has all effected us in ways we could've never imagined. <br />
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This weekend though, we left our new normal home. For the first time since Cohen has been born, we went out and did things as a family two nights in a row! Both of them were rather spontaneous and something we really couldn't have done even a few months ago. On Friday night, we went to a local playroom in Chicago, Peekaboo Playroom, for a Rapunzel sighting and it was so relieving to be able to just up and leave without tons of equipment. From 4-7pm we spent time as a family together outside of our home...away from monitors, oxygen, feeding pumps, beeping, alarms, medicines, etc. Cohen had his first experience at a playroom and Isla was enamored by watching Rapunzel sing. We made it back in time to start Cohen's feed and put them both to bed. <br />
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The next night, we again ventured out to a local neighborhood bar that was hosting the neighborhood association annual party. There were many families there and we had the chance to finally meet neighbors. It was yet again another occasion where Cohen was able to go completely cordless, free of any baggage, and it felt amazing! Sometimes its rather surreal for me to walk into a place with other families and parents of very healthy children. It's challenging to not feel any slight jealousy of their kids walking, talking, and eating normally. It's difficult to have to answer questions about his age, when he appears smaller than he is and then feel the need to have to explain the situation. Cohen is our miracle baby and has accomplished and endured more things in his short life than many people can say they have done. Sometimes it's a reminder though when we do take him out in public and it's a realization that even though to us he is doing so well, seems so chunky, and healthy that he is still so behind. You see another baby the same age as Cohen, who is standing and almost walking and it is a reminder that his development is a struggle for him and continues to be. <br />
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But with that being said, our third and most exciting miracle happened tonight. We were supposed to attend a friend's annual Super Bowl party and Isla had even prepared some snacks from her new Disney Princess Cookbook (thanks Aunt Michelle): Tiger Fudge and Princess Popcorn. After getting all bundled up, looking outside, trying to get a cab, we finally had to change our plans and stay at home. We all changed into our Bears gear and got comfy in the living room waiting for pizza delivery. Cohen was up playing and babbling a little as he sometimes does. But within minutes and out of nowhere, his babbling advanced to actual repetitive ba-ba-ba-ma-ba-ba-ma-ma!!!! Up until this point, he would do raspberries and an occasional "b" or "d" or "g" but nothing like this. <br />
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Tears of joy stained my husband's cheeks (definitely the more sensitive one of us both) and I stood there with my jaw open in shock. How did this just happen? This moment we had been longing for so much had just happened and all during our Plan B Super Bowl Blizzard Party? We ran to get our phones and video tape this monumental milestone for Cohen. Something I don't think I realized until being the mommy of a special needs child is the milestones that they accomplish are far more impressive and overwhelming than of a typical healthy child. Not saying that we also didn't cry tears of joy for our first whenever she did anything, and even today when she learns a new fancy word or when she signs her name. But there is something to be said about the waiting and longing, the hoping and praying, the doubting and pleading that one day he too will go through those same life moments that she did. His road and journey have been tough and challenging and although sometimes I doubted in my mind that some of these things would even happen (probably to save myself the disappointment) it's easy to say that I will no longer doubt him. I will stand by his side as his proud mommy helping him, coaching him, and loving him every bit of the way!<br />
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<br />Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-77153821718910820712015-01-18T20:01:00.001-08:002015-01-18T20:01:50.026-08:002015: The Year of Cohen!When the new year begins, it really takes you by surprise.....like the fact that I haven't posted something in over 5 months. Things have been going great and I was shocked before writing this post that it has been another 5 months already. Routines are in place, therapies are continuous along with doctor appointments, and slow and steady progress is being made!<br />
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Maybe that's one of the reasons why I haven't posted. Getting lost in hustle and bustle of caring for two children. I also haven't posted because originally this blog was supposed to be a means of getting information out to as many people as possible. Ryan and I were tired of having to relay doctor notes, what meds have been changed, recent procedures performed to each person who asked. And so the blog was created. But it didn't occur to me until my MIL's 60th birthday party this past weekend, that many have been wondering how Cohen is doing and what he's been up to. "You haven't written your blog in a while....how's Cohen?" I guess when things are going great you don't think to inform people because you are lost in the wonderfulness of those moments. We have been enjoying each milestone, each first, each memory that is made here at home and have neglected the people that have truly stood behind us, prayed for us, visited us, and comforted us during our lowest points in 2014. So for all of you who are curious and want more than just the average few lines on Facebook, here is the update! (I apologize ahead of time for my lengthy post...but this boy's progress needs to be noted!) Welcome to the Year of Cohen!</div>
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Huge accomplishments:</div>
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Pulmonary/Sleep Medicine:</div>
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No More O2 during the Day! Around October his pulmonologist finally gave approval to remove oxygen therapy to his home routine during wakeful times. We also were given permission to only use his oximeter (oxygen monitor) when needing oxygen and asleep. This was literally a weight off of our shoulders. Frequent walks to the park was no longer a hassle and we were able to carry him there CORDLESS!!! Isla was able to go out of the house and we didn't have to be preoccupied carrying multiple electronic devices for her brother. Cohen will continue to need his 0.5 liters during sleep (naps and night) but not during the day is a luxury! So even though he isn't attached to oxygen during the day, you may see him still sporting his nasal cannula. That's just to save his skin from having the tape to be removed over and over again. He will be getting another sleep study in early February and we are hoping that his airway will continue to improve. </div>
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Audiology (Hearing): Due to having 22Q Cohen needs to follow up with lots of other specialists even if he doesn't present any symptoms of needing check-ups. He had a repeat hearing screening and did not pass entirely. We followed up with ENT and they were able to see some fluid in his ears that could have possibly been from birth, since he's never had ear infections. She also discovered a collection of ear wax that she was able to pull out of his ears. We then did another repeat hearing screening and he passed! So so far, no hearing concerns for our little guy.We will continue to do repeat follow ups with both audiology and ENT to make sure that his hearing stays up to par.</div>
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Opthamology: Another specialist to add under Cohen's resume. We had noticed that he had two different sized pupils back in August when we almost had home nursing come in to help. Upon exam they noticed the different sized pupils. We followed up with opthamology twice since my last post and determined that he was most likely born with these different sized pupils making another cool unique thing about him! He also happens to have sight within the normal limits....and I would like to take FULL credit for this! Hopefully my genes will pull through! The doctor did mention sometimes kids with 22q get lazy eyes so we will be following up every year. </div>
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Plastic Surgery: No, Cohen is not getting reconstructive facial surgery....but he did have a helmet as many of you saw! His white hard hat was only needed for 3 months...Dr. Vicari said that Cohen had some of the quickest progress he has ever seen in a kid Cohen's age. Usually it is recommended for babies to get helmets around 4-6 months of age. We initially were debating this between ourselves...both coming from different angles. I felt Cohen had enough to deal with and really didn't want to add one more thing to the mix. Ryan was concerned about Cohen's future later in life and how his flat head would add even another reason for a mean kid to tease him. With all of the other trials and tribulations Cohen will have to face as he grows to school age, his head shape was something that we could control and hopefully remove a future rude comment. It worked out perfectly because as sweaty as Cohen is, holding off till he was 10 months made the winter time perfect for him to wear the helmet. He adjusted to it very easily, still remained strong during therapy, and we even met some friends along the way who related to his story. It's amazing how adding a white hard hat to the mix really draws even more eyes on the little man. Before it was common for people passing by to notice the oxygen, but now the white shiny hat took the cake! Now 3 months later, it has been removed and another thing peeled off to make his life easier.<br />
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Physical Therapy and Occupational Therapy: We continue to receive therapies in our home 3 days/week when Cohen and I are able to learn new skills and exercises to help him grow muscle and develop. He has made huge progress in the last 5 months and even though he is still behind, he is definitely the LEAST behind in this area of development. At around 10 months he was finally able to sit up independently...this was huge! He also learned to roll out of tummy time, rolls from side to side (not all the way over yet from back to stomach), and reaches very far for toys out of reach. Most recently over the holidays he began bearing weight through his legs without the need of leg braces to help him. <br />
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He enjoys this new view and how he can observe life happening around him! We are hopeful he will continue to make the same amount of progress in 2015 as well! </div>
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Speech Therapy (Speaking): After my last post I was introduced to a speech therapist through Lurie that specializes in kids with cleft palates and does "Resonance Therapy." This is therapy directed solely at how kids develop their speaking skills through imitation, signing, cues, and use of familiar objects. We go twice/month and are given various activities to practice with Cohen to help him develop! Signing common objects to him, and seeking vocalizations from him in order to get something he wants are currently our focus. Instead of Cohen squealing, we are giving him the tools necessary to ask for items even if he doesn't have the words yet to do so. Speech (feeding and speaking) is by far something that he has the most difficulty with and where he has the biggest deficits. This is not uncommon for kids with 22q and is often expected at the younger ages. Currently Cohen will occasionally make a "g" "b" sometimes "y" sound in between his "dolphin" sounds and squeals. To put it into perspective kids his current age (13 months) are usually babbling and have even said a few words (mama, dada, etc). When that day comes for Cohen, both Ryan and I will be beside ourselves. But for now his dolphin sounds light up the room and his smile is magical!</div>
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Speech Therapy (Feeding): Cohen continues to receive speech therapy at home as well as at Lurie. Looking back at how fragile he was when he came home taking pacifier dips (literally dipping a paci into formula for him to practice sucking a small amount of liquid) to now, it is remarkable. With receiving intensive speech therapy and practicing 3x/day at home, Cohen has not mastered but has experienced the following:</div>
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-drinks almond milk with a straw and is able to suck independently. (most still comes out of his mouth, but his control is getting stronger!)</div>
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-likes to eat pureed avocado, hummus, and anything savory. He HATES SWEET foods! (common with very bad reflux).</div>
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-munches on carrot sticks, pretzel rods, inner peas, pickles, puffs cut in half, and metal spoons. </div>
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-has experienced cows milk baby yogurt, pureed gumbo, sriracha bean dip, and today...a meatball.<br />
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When I say "experience" that is what I mean. All of these things listed above are about giving him the experience of what the feeding life should be like. Because he is still using the feeding pump, his hunger is not there and therefore he doesn't truly "eat" these things. He'll take a few bites to about 10 bites on a good day, but we are working hard on developing his oral motor skills and his time off the pump to allow him to be hungry. Speech is very dependent on his GI issues which are Cohen's #1 struggles.</div>
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GI: Per my last post, our GI was not on board with trying to help Cohen grow and thrive and did not have the same expectations for him. We were put into contact with Dr. DuMont who does integrative medicine. After only a few visits with him, he was able to help Cohen advance and also help us pinpoint the struggles we have been having with his feeding tube. He was willing to work on increasing his reflux meds, trying alternative acupuncture, and was very easy to reach in times of . Starting in early September Cohen's feeding tube (the actual site) began leaking occasionally stomach fluids. He was still being fed entirely in his intestine (j port) but it was making our days messy and tiresome having to change his clothes. The docs at Lurie pointed fingers at GI saying Cohen had a "motility issue" that we needed to address and that's why the tube was leaky. Cohen had already been on motility medicine (Eryped) since in the hospital to help keep things moving along. Working with Dr. DuMont, Kathleen (Cohen's amazing nutritionist/dietitian/nurse through E.I) and ourselves, Cohen has made HUGE progress with his feeding. We began trialing him on feeds in his stomach and have been able to transition him to only getting his nutrition there 5x/day. This has allowed for more time off the pump because he is taking his nutrition more frequently and over a fast time frame. He still leaked occasionally but he was not vomiting, proving to us that he was tolerating food in his stomach. The last time Cohen had food in his stomach was before he had gone into the hospital in February when he turned blue on us at home. This was huge gains that we had been waiting for. <br />
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After visiting another surgeon for a second opinion he suggested that the tube could be faulty but also thought it may be a motility issue. Before switching the tube, or putting him through surgery, he wanted to be sure. So just last week after returning from our trip to California, Cohen had a gastric emptying study done at the hospital. He was taken off his motility meds for a few days before and then during the study they fed him a quantity of food quickly to his stomach through his feeding tube. This was followed by a series of pictures every 30 mins so they could monitor how the stomach emptied. We received some of the best news since being home....Cohen's stomach emptied within normal limits. This proved to us that his tube was faulty and these past 5 months of changing outfits frequently and wiping up formula or stomach acid would hopefully soon be over! We have not needed to put him back on the motility medicine either which is another thing he hopefully will not be needing in 2015! We are in the process of getting Cohen changed to a gtube and removing the gj tube. This would be a huge step in the right direction. We could begin to transition him to needing the pump less as his oral intake begins to increase. This is a slow and steady progress that could take years to achieve, but we are sticking with it and so is Cohen.<br />
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And with this slow and steady progress, Cohen continues to grow steadily. He is now weighing in at 18lbs 3 oz and about 27 inches long. (That's a ways away from his whopping 5lbs 13oz and 19.5 inches long!) This little chunker loves spending his days playing with his toys, squealing with his big sis, and making us the happiest parents ever!<br />
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Seeing where it all began..our wedding site in California over our holiday trip to Cali!!<br />
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Cuddling on the cough with my buddies!<br />
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His "first" true Christmas....last year didn't count!<br />
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Thanks to all of you who still care to hear updates about Cohen and his story and journey. I promise to not wait 5 months until my next post so I can share Cohen's progress with all of you! </div>
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Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-60288054730040623422014-08-12T19:23:00.003-07:002014-08-12T20:04:17.203-07:004 Months of Updates, Growth, and Improvements!Rolling...laughing...squealing...and eating! These are all amazing firsts we have been able to experience with Cohen in the comfortable setting of our own home. I have been asked by a few people when the next post would go up on the blog site and I have been waiting patiently for August 7 to arrive. Yes, I know it's now August 12, but that's because I was busy in California for my best friend's wedding. (Congratulations Lorinda and Aaron..woot woot!)<br />
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This important date marks the 4 month mark of being home and out of the hospital. Although this is a huge milestone that our family is celebrating, it's still amazing to think that it is an equal amount of time we spent at Ann & Robert H. Lurie Children's Hospital in Chicago. Now looking back it is hard to believe we spent that amount of time there, living daily walking the halls, eating in the cafeteria, and conversing with his nurses like they were members of our own family. <br />
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So much has happened since my last post in late May. We have had many FIRSTS that we were able to celebrate in our home and not the hospital! He has begun to roll from side to side, not quite interested in rolling all the way over to his belly quite yet. He can now make raspberry sounds with his lips, he began eating his first purees (detailed below), and has his first tooth coming in! We have also had many, MANY follow up doctor appointments with his specialists and for the most part everyone is happy with his progress. Here is a quick breakdown for those that want the nitty gritty:<br />
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CARDIOLOGY: VSD (hole in heart) is starting to close up on its own and at this rate there is a huge likelihood he will never need to have open-heart surgery as long as there are no other complications on the way. He also now shows no pulmonary hypertension which he has had in the past. <br />
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IMMUNOLOGY: Has a great immune system! We are very lucky as many 22q kids struggle to fight off even simple colds and often do not have a thymus. Cohen has a thymus and currently exhibits positive lab results that indicated he is able to receive all vaccinations, including live vaccines. This will be one less thing to worry about with Cohen and peace of mind to know that he will most likely be protected from some dangerous things.<br />
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PULMONARY: His breathing has been slower since our last hospitalization and the only time he really gets going is when he sees his older sister. We have also been given permission to trial Cohen off oxygen for 30-60 mins at a time to see how he tolerates it. This is something we have been pushing to have happen for awhile now, since he never truly needed the oxygen from a saturation standpoint during the day. It was always tough to figure out what slowed down his breathing: the 24/7 oxygen added or feeding him no longer in his stomach to reduce reflux. Both changes were made at the same time, so it's only realistic to try changing one thing at a time. So far, so good! We have been turning off his concentrator after he wakes up in the morning and after his naps and leaving him attached to the oximeter (oxygen monitor) to see how he does. It was a pleasant surprise to see that Cohen can hold his own during the day and as long as he isn't eating, doing intense physical therapy, or rolling causing his sensor to falsly sound, his oxygen sats remain between 91-99% which is normal and what we would want to see.<br />
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SLEEP MEDICINE:<span style="mso-spacerun: yes;"> </span>We
recently had an overnight adventure at the hospital for a follow-up sleep
study.<span style="mso-spacerun: yes;"> </span>This was again another reminder
of how eerie and surreal it feels to be in the hospital.<span style="mso-spacerun: yes;"> </span>Nurses, doctors, stale air, winding hallways,
were all too familiar.<span style="mso-spacerun: yes;"> </span>But this was a
scheduled sleep over and hopefully it would lead to positive results (less
O2).<span style="mso-spacerun: yes;"> </span>The sleep study went very well,
well as can be expected for someone that is hooked up to 100’s of wires, monitors, and
probes and then having you almost confined to the bed in a baby straight
jacket, was a perfect combination for a deep and restful sleep. It is still amazing to me how any results
come from this get-up. His results were impressive and although we don’t have
his official follow-up meeting with who we call, “Mr. Sandman,” we were excited
to hear that his oxygen needs have decreased while sleeping, needing .5 liters
now instead of the current 1.5; however, this is up for debate as we have yet
to decrease oxygen support at home until our follow up appointment. He did seem to have the same amount of apneic
episodes though, so who knows at this point.</div>
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SPEECH:<span style="mso-spacerun: yes;"> </span>This is by
far the most important area to me….maybe I’m being selfish or<span style="mso-spacerun: yes;"> shallow </span>but to me eating by mouth is
something that represents a sense of normalcy.<span style="mso-spacerun: yes;">
</span>Although Cohen has many devices hooked up to him, he still remains an
active part of the family.<span style="mso-spacerun: yes;"> </span>He is able to
do most of the things that his sister does.<span style="mso-spacerun: yes;">
</span>He visits parks regularly and takes soapy baths at night.<span style="mso-spacerun: yes;"> </span>He is able to laugh and squeal, play with his
sister on the mat, and enjoy books.<span style="mso-spacerun: yes;"> </span>All
of these things are typical activities most babies participate in with their
families and they are still possible without his oxygen needs getting too much
in the way of those things.<span style="mso-spacerun: yes;"> </span>But having a
feeding tube is something that does not allow him to experience the same things
that we do on a daily basis.<span style="mso-spacerun: yes;"> </span>His feeding
tube has been a godsend, don’t get me wrong…and I know without it he would not
be surviving and thriving as well as he is doing right now.<span style="mso-spacerun: yes;"> </span>He has even formed a strong connection with
his Pete the Pump and often squeals when it is brought into the room, but we
continue to remind him to not get too comfortable with it.<span style="mso-spacerun: yes;"> </span><span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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But, the thought of him sitting at the dinner table with us
each night and not eating in the same way, not going out to our favorite family
restaurant on Friday nights and eating pizza together, or tasting his friend’s birthday
cake, is something that frightens me.<span style="mso-spacerun: yes;">
</span>There are many children and adults in the world that don’t get to have
that “normal” part of their lives and are forever hooked up to a device that is
feeding them.<span style="mso-spacerun: yes;"> </span>Whether it is for
supplementing nutrition, or because they are unable to swallow, feeding tubes
help them live and survive.<span style="mso-spacerun: yes;"> </span>The thing
that has always irritated me though about this entire situation is we were
unable to feed Cohen because he was breathing too fast…not because he couldn’t
swallow or had an aversion to it.<span style="mso-spacerun: yes;"> </span>Of
course, I didn’t want him choking, but it killed me to know that he was able to
do it and we had to put it off week after week.<span style="mso-spacerun: yes;">
</span>My fear was that the longer we waited the harder it would be to get him
to want to eat by mouth and in the end he wouldn’t be eating with us because he
was breathing too fast, not because of his swallow.<span style="mso-spacerun: yes;"> </span>We have been working closely with his speech
therapist 2x/month to continue to have him take tastes from his pacifier and
recently increased to tastes of purees on a spoon.<span style="mso-spacerun: yes;"> </span>This has made a world of a difference for
him.<span style="mso-spacerun: yes;"> </span>He has always been a very ORAL baby
putting everything and anything he can grab into his little mouth.<span style="mso-spacerun: yes;"> </span>He has now progressed and can hold a spoon
and put it directly into his mouth, much more coordinated than his sister was
at this age.<span style="mso-spacerun: yes;"> </span>He has worked up to trying:
avocado, carrots, papaya, peas, and prunes.<span style="mso-spacerun: yes;">
</span>He is very partial to avocados of course!<span style="mso-spacerun: yes;"> </span>We worked on this 3 times/day to help him
take a large enough quantity to attempt another swallow study. His previous
swallow study showed that he was aspirating thinned liquids due to his lack of
coordination with breathing fast and swallowing.<span style="mso-spacerun: yes;"> </span>A reminder, he was less than 1 week old at
the time <span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">L</span></span><span style="mso-spacerun: yes;"> </span>Cohen’s biggest difficulty with feeding right
now, is he is STUBBORN!<span style="mso-spacerun: yes;"> </span>He wants to be
in control and put everything into his mouth on his own.<span style="mso-spacerun: yes;"> </span>This is great for keeping his interest,
although not ideal for getting the calories in there.<span style="mso-spacerun: yes;"> </span>He was able to barely pass a swallow study
with just one swallow because he wanted to do everything and was unable to get
a large enough volume inside his mouth and the doctors had to take over. This
is huge progress from having only pacifier tastes and we are hopeful he will
continue to make progress on this long journey ahead.<span style="mso-spacerun: yes;"> </span>The day we can all sit down at the table
together and eat a meal will be a very exciting one.<span style="mso-spacerun: yes;"> Here is Cohen munching away on some pretzel rods after laughing and screaming trying to get Ryan's attention to hand them over!</span><o:p></o:p></div>
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GI, otherwise known as…CLUELESS.<span style="mso-spacerun: yes;"> </span>They are the pains in my side, the doctors
who haven’t and won’t take responsibility for what could be his biggest medical
issue.<span style="mso-spacerun: yes;"> </span>If you’ve read previous posts
during Cohen’s early hospitalizations, you would remember the back and forth we
played trying to figure out the cause to his rapid breathing and major medical
needs.<span style="mso-spacerun: yes;"> </span>Cohen was taken off reflux meds
and then put back on them…then off and then on again.<span style="mso-spacerun: yes;"> </span>Recently we had a follow up appointment with
them.<span style="mso-spacerun: yes;"> </span>They were angry that I had
continued to give Cohen purees even though they thought it was best for him to
not take any yet.<span style="mso-spacerun: yes;"> </span>They have always been
the doctors who I’ve had to convince to make changes, take responsibility, and
actually help!<span style="mso-spacerun: yes;"> </span>They again emphasized
that they were not interested in letting him eat by mouth, even if he were to
pass the swallow study.<span style="mso-spacerun: yes;"> </span>They were
cautious and wanted him to wait until he was fully sitting up unassisted.<span style="mso-spacerun: yes;"> </span>This was something I did not take
lightly.<span style="mso-spacerun: yes;"> </span>It was important that I told
them how we felt and that we were not about to let Cohen sit back and again
wait for another change to be made.<span style="mso-spacerun: yes;"> </span>They
are unwilling to work with us so it is only in our best interest to start
looking for an alternative GI doctor.<span style="mso-spacerun: yes;"> I'm sure there will be more to come in a separate post regarding this. I'll leave you with a few highlights of him being home and us loving every second of it!</span><o:p></o:p></div>
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<span style="mso-spacerun: yes;">In crawling position.</span></div>
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I'm 8 months old and it's flying by!</div>
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<span style="mso-spacerun: yes;">Check out that signature mohawk!</span></div>
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<br />Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com1tag:blogger.com,1999:blog-5613957868277863578.post-5058117230183970772014-05-30T20:21:00.000-07:002014-05-30T20:21:01.454-07:00As he should be...Wow! Time really does fly when you are enjoying your precious baby at home and not having to travel to and from the hospital twice/day. I can't believe it has already been 2 months now since we have been home and Cohen has finally settled into his surroundings. He no longer startles when his sister comes running in the room, enjoys gazing at our two fur balls (Karen and Vinny), attends weekly music class at the Old Town School of Folk Music, and is experiencing life as he should be!<br />
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As he should be! That is something I say again and again to gawkers, questions, raised eyebrows and even his nutritionist when she asked why I had signed him up for a music class..wasn't I worried about germs? Of course I'm worried about germs, but Cohen and us should not live in fear hulled up in our home like hermits for the rest of our lives. After his immunology appointment, we received some very good news that because Cohen was born with a thymus gland, his immune system is very strong. He also has great calcium and thyroid levels, as well as his production of t cells and his t cell memory function which are highly related to how his immune system functions. Because of this great news, I wasn't as hesitant to keep him on lockdown in our home. Of course even a small cold will most likely send Cohen back in the hospital, it is less likely he will catch anything more than any other typical kid his age. We want Cohen to get those experiences that our daughter Isla was able to experience. He was enamored by the music therapist in the hospital, cooing to her strumming of the guitar strings. He should be able to experience these special moments in a baby's life no matter how many cords, monitors, or machines it takes to get him there. "As he should be," I said with my eyes to the open-mouthed parents that watched me lug in his equipment into the room. Why should my child not be able to experience something so amazing as a 30 minute music class, so you can feel more comfortable with yours? Not every parent had that reaction but I am still surprised by how many people do not look me in the eye when I walk into a room with Cohen. I'm hoping they are just envious of my "super mom" capabilities. :)<br />
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The past month has been a whirlwind of more doctors' appointments, therapy sessions at the house, smiles and more smiles! This is one happy baby! For everything he has been through it is so refreshing and rewarding to see Cohen's smile. It lights up the room and warms your heart. <br />
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We have also been taking some time to spend getting to learn more about 22Q and help spread awareness. It is amazing how common this disorder is, yet it sounds like a foreign language when you tell someone who asks. Annually there is a day in May where zoos around the world host groups to spread awareness for 22q....22Q at the Zoo. This year we attended and made shirts to spread awareness. The shirts actually had people talking, so even if we were able to get one person to google 22q when they got home, it was worth the trip to the zoo that day. <br />
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Also, for many people that already know, Ryan is actively working on spreading awareness through his new mission State of Kind. He is attempting to do an act of kindness in every state and helping promote 22q by working with the Dempster Foundation. Ryan Dempster, a famous baseball player, has a daughter with 22q, and he created this foundation to help spread awareness for the rare genetic disorder. He is working with a local brewery here in Chicago, Pipeworks Brewing, to create a beer that will help with this. Last week, he went over to the brewery to help brew Cohen's State of Kind beer, a wit ale made with blueberries and hibiscus. Here is a sneak peak of what it will look like. <br />
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There will be a fundraising event to promote the beer and a percentage of proceeds will go to the Dempster Foundation. I am so proud of my husband for creating this mission, blog, and now beer to help everyone see how amazing our little guy truly is! You can learn more about his project at 366randomacts.org. <br />
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So lately these days have been spent getting big and strong. Cohen is now up to 12 pounds 13 ounces and counting! He has doubled his birth weight finally and has also gained over 2 pounds since being out of the hospital. This is huge for him and almost not expected with everything he has going on and the amount of therapy he does/week; however, Cohen isn't your average baby. Here he is actually enjoying his tummy time for once, as he should be!<br />
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<br />Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com1tag:blogger.com,1999:blog-5613957868277863578.post-76558776981094812352014-04-28T19:44:00.001-07:002014-04-28T19:44:37.388-07:00Really...we are STILL home!Cohen was discharged on a Monday. Today is a Monday and it has been three SOLID weeks since his discharge from the hospital and time has truly flown by. We now look forward to Mondays so much more than Sundays. Sundays were more often than not the days that we returned to the hospital. If Sunday blues wasn't already an issue...this would always top it off! The hospital stays always seemed to take forever and days felt like weeks in there. All of the countless hours we waited around for doctors to come see us in our room, or hours waiting for Cohen to be off food for a procedure, or hours of trying to get him to sleep in a well-lit room with nurses taking vitals every hour. Hours and hours of wasted time and time that we would never get back. But being home now, none of that matters. It's hard to even imagine what life was like living out of a reusable TJ bag shuffling our belongings to and from the hospital and waiting all of those hours. It's crazy to even say, but it doesn't even seem like it was that length of time that we spent being a separated family living in two different places. Because now life is so amazing and meaningful that the hours spent at home are finally filling those hours that were lost. <br />
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Cohen has started his therapy at home and is really starting to improve on his development. He will be doing physical therapy twice a week, occupational therapy once a week, and a nutritionist will also be following him three times a month. <br />
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We are so thankful that Cohen can receive his therapies in our home. It is one less thing to have to travel to since we have SO many doctors appointments. We were finally able to go to some of his follow up appointments and both us and the doctors were so excited to see each other at the office and not at the bedside. Cohen went for his GI follow up and speech appointments last week and both went very well! GI felt that he should discontinue taking one of his reflux meds (Zantec) since he is showing improvements and never had huge evidence that he needed to be on 3 reflux meds. Since doing so, he seems to be doing well. Less medicine is a good thing!! Speech worked with us on tastes on his pacifier. I believe I described before but currently Cohen is cleared to do taste tests of formula on his pacifier to keep him interested in feeding until he is ready but also to keep his suck! Our biggest fear for Cohen is that he will lose his interest in eating and when the day comes to actually try, he will be unable to or unwilling to do so. Oral aversion is common for kids with gtubes because they don't get the everyday stimulation nor nutrition through their mouths on a regular basis. Because of his history they don't quite feel comfortable letting Cohen drink a bottle and that day may never come. Working closely with GI they will decide when the time is right. In order for him to do so, he'll need to first be able to eat again in his stomach through his gtube and be able to sit up independently. This will help with his reflux and gravity will help keep the food down! We have a follow up appointment with GI in four months to check in again and see if he is ready. Hopefully then we can finally try to feed him by mouth. The last bottle Cohen had he was about 2 weeks old :( Eating for Cohen will be a long waiting game and there is a chance he may even skip the bottle stage and go right to purees. There is a common struggle among children with 22Q and that is related to feeding difficulties. Whether the child has a cleft lip/palate, swallowing issues, breathing problems related to heart problems....it is a common struggle that is a long battle they will eventually overcome but it could take years ! <br />
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Today we went to two more follow up appointments: Urology and Cardiology. Urology went well and the fluid that was shown in Cohen's kidneys from our 20 week ultrasound with him is continuing to clear up and is very minimal now. He is scheduled to finally get circumcised as well in June, which is rather exciting for Ryan :) <br />
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Cohen's cardiologist Dr. Randolph has been by our side since Cohen was only hours old. Also Isla's cardiologist (don't worry she only has a small heart murmur that has been healing on it's own quite nicely), he has been the constant doctor in Cohen's life. He was able to weigh in on the changes in his breathing over the months in the hospital for the new doctors Cohen would see, what was baseline for Cohen, and has been very supportive of and sometimes even a shoulder to cry on when times were tough. He was impressed with Cohen's last echo from the hospital so the plan is to repeat one every few months and to monitor his hole to hopefully watch it close on its own. "I think he is finally over that hump" he said today which made me smile ear to ear. Hearing a professional say that only validates the way we have been feeling at home. <br />
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Also asking a rather difficult question today I received a rather disappointing answer. Cohen won't be flying anytime soon! I have been unable to travel home now for over 10 months. Being from California, I had visited there the previous July while pregnant with Cohen but because I was pregnant and then he was born and we have spent our time in the hospital, I have been unable to go back home to visit friends and family and show off the little guy. I am so homesick it is unreal. Some friends and family have been able to fly out to visit us and Cohen (usually while in the hospital), but it's never the same as flying back to California. Never being able to see everyone in the same place at the same time is something that makes me cry just thinking about. It was my mom's birthday today and over the weekend everyone got together (cousins, grandparents, everyone except for me and my family) to celebrate her special day with her. My mom was able to come visit and finally see Cohen in our home and not the hospital. She spent a week here and when she left it made me miss home even more. <br />
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As for returning to California we may need to get creative in our ways we travel for the meantime, because his cardiologist doesn't feel comfortable having him travel anywhere in a plane until he is stronger and bigger. I'll be finally traveling out with Isla in June for my friend's bachelorette party and again in August for her wedding but we will be leaving the boys behind. :( <br />
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As for visitors...anyone who wants to come visit us the door is always open and we have an extra bed :)<br />
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We'll leave you with a video of Cohen from today. His newest trick....starting to laugh!<br />
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<br />Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-30716913234195906402014-04-17T19:27:00.002-07:002014-04-17T19:27:35.663-07:00Happy at HomeI'm writing this post much later than I would've liked to, but primarily due to superstition. Tomorrow will mark our longest stay home to date, 11 days! Our first 2 stays were each 9 days long and the last stay home was only 11 days. By the time we would get into any type of routine, we were racing back to the hospital to stay for another few weeks. These 11 days have flown by and it's hard to imagine even being in those closed hospital walls just 11 days ago. Before we would find ourselves having conversations with our son's nurses. Now we were able to have conversations with parents at the park and finally with each other in person. This stay home has also marked the longest period of time that Ryan and I have been able to sleep in the same bed. Our daily routine does not consist of dropping Isla off with our nanny Kelli-driving to the hospital-talking to doctors-often crying-talking to more doctors-etc, etc. Now our daily routine is solely surrounded by spending quality family time together and making memories that we had been robbed of over the past 4 months. <br />
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Two Mondays ago, we brought our "chubby" 10 lb baby boy home again for the fourth time, and yet again it felt as if we were bringing home a newborn again. Again there were moments of overwhelming chaos trying to care for Cohen, moments where we were stressed by even little things like a light bulb burning out in the house or the dog needing to go for a walk, moments where we hugged each other in the kitchen because we were so happy to have our family together again . But this time has been different in so many ways; different in so many good ways! This is the first time home that we didn't have to learn any new equipment to care for Cohen. We were already very experienced with his feeding tube and now that he was on less oxygen requirements, we felt even more at ease. If his oxygen monitor went off, we knew to look at him for symptoms and not freak out the minute his numbers dropped because we felt more comfortable with the situation and with him. We were already used to giving him 3 medications, 3 times/day.<br />
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We picked up a routine as a family. We jumped right into this opportunity at home because living the last four months in the hospital has made us realize we can't take even a minute together for granted. Cohen was starting to take a few naps during the day and sleep more peacefully during the night. I'm able to get some one-on-one time with Isla during Cohen's morning nap where we can go downstairs and play in her room. We try to take a daily outing when Cohen is on a "food break" and now that the weather is nice we head to the park. It is rather difficult packing up two kids by myself, so you can only imagine having to pack up an additional travel oxygen tank, oxygen monitor, and sometimes a feeding backpack. But it is completely worth it to give that bit of normalcy to him and to her. Cohen has never had the opportunity to go to the park over these last four months like any other baby would have experienced. He has missed out on so many experiences that I took for granted with Isla. Feeling fresh air on his face, hearing birds chirp, seeing other kids play and talk, having playdates, attending music class. The list just goes on and on. These are all things that don't exist behind the hospital walls and giving those experiences to him is so important and priceless at this point!<br />
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Isla has been truly enjoying being a big sister. She is so helpful, bringing us diapers, his medicines, and often wanting to inspect his dirty diapers :( His past 3 times at home she has always been in the "honeymoon" stage with her baby brother, cooing around him and wanting to be a part of everything he does. Over these 11 days she has continued to be starry-eyed about him and has maintained her interest for him. It has been so heartwarming watching her grow into this new role as a big sister. She takes it so seriously and enjoys spending most of her time with her baby brother. Daily she asks to hold him, change his diaper, push him in his stroller to the park, and hold his hand while he sleeps. It is truly magical to watch the two of them together and though while pregnant with him we were nervous about how our relationship with Isla would change and how our decreased attention toward her would affect her, we have both been so surprised with how she has reacted to the change and how we couldn't have imagined living our lives with only her in it. Now if only this "honeymoon" stage continues we will all be happy campers. <br />
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Yesterday Cohen had his evaluation by Early Intervention. It is a state-funded organization that helps families with children that are showing delays or children who have diagnosis that would have noticeable delays to have the support necessary to help them grow, develop, and strive to meet their potential. A team of 6 people showed up at our door yesterday (Developmental Therapist, Occupational Therapist, Physical Therapist, Speech Therapist, Nutritionist, and Social Worker). All of them were here to help evaluate Cohen and determine whether or not he would qualify for services or not. After my length medical history, their evaluation, and many answers to their detailed questions, it was determined that Cohen would benefit from seeing ALL of them at various times. Even though this was rather overwhelming for us as parents to know that Cohen needed that much support, we are also eager to have him begin his therapy so that he can grow and thrive and the days in the hospital can eventually all be a distant memory, something that he can share on his first day of school with his friends as a "fun fact" about himself. <br />
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<br />Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-597695063746916582014-04-05T12:13:00.001-07:002014-04-05T12:35:46.163-07:00Moving Day!We are not celebrating quite yet or ordering the UHAUL, but it's looking like the big moving day may be coming on Monday! We are keeping our fingers crossed just in case. Cohen has been behaving himself quite well and although he's getting very settled into his hospital bedroom, it's getting time to say our goodbyes. This past week has been all about making simple changes to fine tune our little man. We have been working on weaning off of Ativan, increasing his feeds, and making sure he is an all-around happy baby!<br />
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He was finally able to fully stop the Ativan (the evil drug he was put on over a month ago to come off of the sedation meds from the ventilator). Cohen had a very hard time weaning off of this medication, and the small dose he was getting was something he craved each day. It was gut-wrenching to watch our four month old startle in his sleep, sweat through his buttoned-up footie pjs, and be so irritable that at times we stayed up all night rocking him in the blue pleather rocking chair adjacent to his bed. It was a nightmare that Cohen lived for a solid month, that we watched him endure for almost 30 days! Finally a few days ago he was given his last dose of Ativan (0.1ml) and the symptoms subsided. That was one of the hurdles he needed to jump over in order to be discharged, but there were a few more as well.<br />
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Cohen's feeding has also been an ongoing issue. Being in the 3% for his weight, he has always had the odds against him and being hospitalized so much has only added to his struggle with his weight. We did the math the other day and with all of the procedures and events in Cohen's life he has been NPO (no food) for equivalent to about a week and a half. That is an enormous amount of time for a newborn to have no food. This week we worked on increasing his rate of his feeds up to 33ml/hr which would allow him the calories he would need to gain weight as well as get 2 (3 hour breaks) To put this into perspective a newborn usually takes about 33-60 ml in a 20 minute feeding period. Cohen is taking that over an hour but on the lower end. So although he is meeting his caloric intake, he could be getting a lot more volume if his little belly was able to tolerate it. He did very well with the increase and once we were able to tease out the symptoms from weaning his Ativan, we could see that his dry-heaving was not from the volume of his food. He has been gaining weight slow and steadily and is just now over 10 pounds. We will be weighing him weekly and work closely with a nutritionist to help determine when he can increase his volume again.<br />
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Cohen has been finally able to participate in play group in the hospital. Every day from 10:00-11:30 downstairs on the 12th floor there is a baby play group where patients can come down with all or none of their equipment, depending on what they are attached to have a change in scenery and environment. Cohen has been in the hospital for approximately 39 days this hospital stay, but in total around 102 days! He has missed out on stroller walks to the park, play groups, meeting other babies, and doing everyday routines that all babies get to experience solely because he has been sick in the hospital. This week finally being stable enough I was able to convince the nurses to allow us to take him to the playgroup so he could see a setting that was engaging and stimulating! He loved it! The minute he was in his stroller he was smiling and so excited. Here are some highlights from his time during the playgroup sessions.<br />
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He was starting to get into a sleep routine because of this which was great! Taking shorter naps throughout the day and this has improved his evening sleep as well!<br />
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It is officially 48 hours before we will hopefully get to take our little man home for the fourth time and we are hoping this is the one that will stick! As ready as we were the last time, this time feels right. He is coming home with less equipment as before, but some additional meds to help his reflux. His breathing is the best it has ever been and we are no longer needing to time him or stare obsessively over his monitors. In fact, he has graduated and now is only being monitored on a pulsomitor which we use at home anyway. His previous nurses have been coming by his room to see him; he is quite the VIP patient on this floor and in the hospital. Last night, our favorite nurse from the PICU downstairs, Jill, came by to see him and she was genuinely so happy to see him doing so well and ready to go home. She calmed us during some of his roughest nights when he was intubated and having her be there on consecutive nights in the ICU was so helpful to his health and gave us stability! We also said goodbye to two of our favorite nurses on the 21st floor, Sarah (who I've talked about in a previous blog) and Mary Kate. Mary Kate has become one of Cohen's regular nurses as well in the evenings and is Sarah's roommate. They have grown so attached to Cohen and our family (we would like to think), that they have declared Cohen the "mascot" of their apartment. They treat him with as much love as we could give him as his parents. We often would find ourselves not rushing into the hospital on the days/nights that we knew they were working because he was in good hands. Don't get us wrong the majority of the nurses at this hospital are amazing and very helpful, but these two in particular are MADE for this job. Like I said in a previous post, even if Cohen was having the worst day and everything seemed to be hopeless, they would give us hope. They paged the doctors immediately if we had any questions, they took time out of their day to socialize with us when we were feeling lonely and left in our small, stark hospital room. Although they are very much sad to see Cohen go home, they are very excited for him because they too are hoping that THIS TIME he will STAY home. Hopefully one day we can just return to Ann and Robert H. Lurie Children's Hospital to visit them again and all of the wonderful doctors, nurses, and staff that took care of him during his biggest struggles.Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-40376891936215505522014-03-29T08:36:00.003-07:002014-03-29T08:36:28.782-07:00Vacation Time!It has been 4 glorious days of vacation up on the 21st floor. The hallways are empty and quiet, darker than the PICU, and less hustle and bustle which is exactly what we all needed. Now only if Ryan and I could be laying out at a pool and sipping frosty drinks with umbrella we would ALL be happy campers, but for now that can only be a distant dream.<br />
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Cohen, aka: Mystery Man, for the most part has been smooth sailing upstairs. His old nurses and attending doctors welcomed him back with open arms and all took turns coming to see him. They could believe he was back, but couldn't believe the path he took. No one had anticipated his health and needs changing so drastically. Most everyone was impressed with how big he was, even to us he still looks so small, there have been notable changes and that was good to hear!<br />
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The goal for our vacation upstairs was to fine tune Cohen so he would be a safe and strong engine we could eventually take home for good. The doctors wanted to work on continuing to wean him from his narcotics, increase his feeds to reach his caloric intake goals, as well as try to calculate his true oxygen needs. Weaning off the narcotics has been a slow and steady process for Cohen. He has really shown to be very sensitive in general and even this has shown to be true throughout this process. Next Friday it has been three weeks since he has been off the ventilator and he is still feeling the effects of the medicines. As for now Cohen still has pretty significant symptoms of withdrawal so we are trying to space out when he receives his medication, day by day. <br />
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Last night he had his fourth sleep study. This is right after he was finished with it and still has the icky hair to prove it!<br />
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Once again his body was covered from head to toe in wires and probes to monitor every movement, breathing, co2 levels, rapid eye movement, etc. Cohen held his own for about 15 minutes with no oxygen requirements, but then dipped his oxygen sats to the 80's so they slowly increased his oxygen and was very content on 1.5 liters. This seemed to be his "sweet spot" and he was able to maintain 100% oxygen saturation, while breathing comfortably and having lowered co2 levels. Even though this is a slight increase to his oxygen needs from our 2nd discharge from the hospital (only needing 1/8 of a liter while sleeping), it was a HUGE improvement from the previous discharge (needing 4 liters of high flow 24/7). They are still planning to work out whether or not he truly needs to be on oxygen during the day as well, but we are happy with not needing to travel home with HIGH FLOW. No more humidified water rushing through his nasal cannula for him to choke on. He will now only be hooked up to a pulsometer, feeding pump, and oxygen concentrator. I'm also working with the doctors and our insurance company to hopefully get approval for another oxygen concentrator for downstairs, so he can venture down to his room for the first time one day. <br />
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Besides from all of that, even in the confines of his small hospital room on his vacation Cohen is developing remarkably for everything he has already endured. He now has a state-of-the-art toy string that hangs across his hospital crib where he can work on batting, swatting, grabbing, and everything else a 4 month old should be doing. <br />
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He is now sticking out his tongue and smiling on a regular basis (even while dreaming)<br />
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and has recently found his mouth with his hands. These are such huge accomplishments for him!<br />
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<br />Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-40346661098346465422014-03-21T10:32:00.002-07:002014-03-21T10:32:19.181-07:00Vacay to the 21st floor postponed!Plan B was set in motion and Cohen was supposed to travel in his baby throne upstairs to The Floor. In hospital terms when ICU nurses or docs talk about "the floor" they are talking about the less intensive hospital floor where the ratio of patients to nurses is 5 to 1. Everyone was very excited last Friday and expecting him to vacay on the 21st floor on Monday for a few weeks until he was able to gain weight and be more stable and comfortable for transporting back home. <br />
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Well as we all know by now, Cohen doesn't always exactly like to follow THE PLAN. Over the weekend he became increasingly irritable, upset, and every other synonym you could possibly think of for this. He wasn't sleeping, was unable to do any type of physical therapy and even his regular nurses were commenting on how different of a kid he was. We had been increasing his feeds and changing his formula, as well as still trying to wean him from Methadone and Ativan. He was dry-heaving every few hours even though we were no longer feeding him from his stomach and he was unable to be alert and happy at the same time. It was hard to say what was causing this change but we continued to bring up this drastic change during rounds each morning and doctors were hesitant to look deeper. Finally on Tuesday morning, they agreed maybe we should get an x-ray of his abdomen since it seemed to be GI related. <br />
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The x-ray showed that he definitely had some stool in his bowl and possible air (Pneumatosis). This was quite worrisome to us but also at least would help answer why he had been so upset for the past few days. GI and Pediatric Surgery came to consult and decided to go NPO (no food) for 48 hours. They would need to monitor his bowel with many x-rays and antibiotics to make sure it did not persist and improve or it could lead to further complications for Cohen.Pneumatosis was common in kids with feeding issues, jtubes, but also could be a sign of something else that was wrong and we needed to rule this out.<br />
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I was upset, outraged, and worried. This little guy could never catch a break! His only job right now was to sit tight and pack on the lbs and he couldn't even do that. If it wasn't for an amazing nutritionist, Laura, who follows Cohen, I would have been riding solo arguing with the doctors over whether or not we could start TPN (Total Parenteral Nutrition). For even a few hours it was sabotage to Cohen to hold his food. If we had to hold off on feeding him through his stomach or intestines, at least he could get something through his veins to help combat the lack of food.<br />
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Yesterday they did a J-tube study to make sure that his jtube was properly positioned and not causing any of this new discomfort. They had found a kink in his jtube causing the formula to be pushed back into his stomach slightly. They switched it out for a new one and are hopeful this was partially the cause to his grumpiness.<br />
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Fast forward a day and Cohen is back to his happy self. He is smiling daily. With an empty belly he seems to have stopped the dry heaving, is less fussy, and doing what babies should be doing: smiling, cooing, and flailing appendages. The doctors took close note of these improved changes. Today during rounds he has passed the 48 hour mark and was able to start chowing down on some fortified formula :) We agreed as a team that we only change one thing at a time to rule out the cause to his fussiness. We would start him back on the same formula but at a very slow rate and work him back up to his normal goal. We also would hold off from weaning him of any meds until tomorrow to make sure he was tolerating the food better and it wasn't another variable added in. <br />
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So for now we are content. Although he was unable to go vacation for a few weeks on The Floor, we are happy he is having a content Stay-cation on the 16th!Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-70965419366514802272014-03-14T11:07:00.001-07:002014-03-14T11:07:11.380-07:00I'm Back!Over these past 12 weeks that Cohen has been fighting for his life in and out of the hospital, we have been amazed by his strength, resiliency, and especially his attitude. He is one happy baby!! Even with having a tube in his mouth and being on crazy amounts of drugs, this little boy is one tough cookie! <br />
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To back up a few days ago, Cohen was making great strides on his very cool Heliox set-up in the hospital. His cardiologist came by to see him and could not believe how amazing he sounded. This proved to the doctors that he definitely had an unidentifiable obstruction. Because the heliox was able to travel into small passageways, his breathing was slower and much quieter! After a few days on his trusty sidekick tanks, the doctors had proved their point and felt comfortable taking him off of the Heliox. They wanted him to return to his original home set-up but the plan was to get him down to less flow if tolerated. <br />
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Today Cohen is breathing easy on only 2 liters of regular flow, not even high flow! He is doing so well and the doctors are so impressed with how he has improved. If we could get him home on regular oxygen and not even high flow it would be a world of difference to his quality of life and our sanity. We could venture outdoors more with a travel oxygen tank and not be restricted to the amount of hours he would have to be detached from his high flow system. <br />
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Dr. Harris, the amazing and caring doctor we have had all week is convinced it is reflux that has exacerbated all of his issues and she may even have me convinced at this point as well. Talking on rounds today, we discussed how the pulmonary team is so impressed with the difference this week has made and how they were also now believers that this may not be a rare lung disease. As frustrating as it is to watch these doctors teeter totter their motives, theories, and beliefs I feel happy and confident if they are happy and confident. Having so many specialists involved often is a negative thing because fingers are pointed and someone wants to finally be able to claim they have found the source of Cohen's struggles; however, often times theories and ideas only confuse the situation more and often scare the hell out of us!<br />
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Dr. Harris, Ryan and I have chosen Plan B for him at this point. We want him to be the most stable and in the best place possible before taking him home for the fourth time. We want it to be successful and memorable for positive reasons, not scary memories. We want him to gain weight, breathe easier, and hopefully one day outgrow all the wires, cords, and monitors that are attached to him. Our three month old has grown accustomed to being weighted down by his hospital shackles as have we with holding him and trying to ignore them. For the meantime he will continue to be hooked up to these shackles as he grows and gains weight..hopefully quickly...but at least he will do it all while smiling :)<br />
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<br />Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-6184467358092423052014-03-11T12:30:00.001-07:002014-03-11T12:30:11.326-07:00Heliox and WithdrawlsCohen made a smooth adjustment off the ventilator and was enjoying having full access to his hands again. Usually sleeping with his hands straight in the air, like he was riding a roller coaster, is the way he enjoyed sleeping. But being on the ventilator, the adults had strict policies about keeping their hands off the tube. This was understandable because Sir Cohen tended to not be trusted with his hands (ng tube pulling). So at last he could sleep with his hands free from any blankets and was comfy.<br />
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He was also enjoying his sleep because he was still on some sedation medications. When on the ventilator, he needed some form of sedation to keep him calm. Because these sedation medications were fairly strong, he would need to be weaned from them. As a mother, I never thought I would have to witness my child going through withdrawals from drugs, let alone at such a young age. Having spent the past week on a ventilator, he had also been on those medications for the same amount of time keeping him calm and distracted from the tube in his mouth. Treating his like a heroin addict, he began to receive small doses of Ativan and another medication. Also to bridge him between doses of these meds, he was occasionally given morphine. Watching Cohen tremble in his sleep in between doses, sweat, and be very irritable was heartbreaking to see. I was watching my 3 month old son go through something he shouldn't have to go through. He was experiencing something that people do to kick something they have had a habit for for a long time. He needed to be on the ventilator to keep him stable and this was the risk. Everything in medicine has risks and benefits and this was one of those things where the benefits of having the breathing tube put in at the time outweighed the risks. <br />
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Over the next few days he has improved and is still on low doses of these medications but is getting better each day. His cry is not as loud as before because he is still rather swollen...but honestly I don't mind the quiet cry! He can keep it if he wishes.<br />
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Ever since we had started feeding him strictly through his jtube to his small intestines, many things had improved for him. He was no longer coughing and gagging up phlegm, and he was breathing more easy. Maybe after all the kid had some reflux going on after all. Dr. Harris, the current attending, was making it her mission to treat him like a chronic reflux baby in hopes of improving the swollen airway. His airway was swollen due to the tube being in but also possibly due to repeated aspiration. Over the weekend he still sounded terrible when he cried, but was no longer showing any signs of reflux. All of the nurses were on strict orders to deliver all medications as well through the jtube or via IV. <br />
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Yesterday on rounds Dr. Harris proclaimed her views to the 7 residents taking notes in my room, that she truly did not believe this was a case of interstitial lung disease but could quite possibly be chronic aspiration. They suggested trying Heliox as a method for further determining whether or not he did have an invisible obstruction. Heliox is a mixture of helium and oxygen. Because helium is a lighter gas it can travel with less resistance down the airway and into small openings of the lungs than oxygen can do. Their reasoning behind this was not to start us on another new therapy to take home, but to validate whether or not this airway obstruction did exist. Now we sounded like we were treating an alien with some crazy rare illness. Where did they come up with this stuff? If not for Cohen, I would've lived my entire life and never have experienced Heliox. <br />
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Heliox is no joke. They showed up with these two huge tanks filled with the Heliox solution. After being hooked up for only 10 minutes, Dr. Harris called me at home. After getting over the initial shock of seeing the scary hospital numbers come up on my caller id of my phone, I listened to her words as she uttered, "he sounds the best he has ever sounded. He is breathing calmly and quietly." Like a normal baby, I witnesses what most parents get to witness when they take home their baby, a peaceful, quiet breather. As I held him in my arms, I couldn't get over the fact that he was silent. I was so used to hearing his striderous sound it was amazing to hear him so calm. Dr. Harris suggested we talk to discuss plans for Cohen. At this point, they do not have helium therapy that is available in the house. I was very happy about this because after seeing this set-up you an only imagine how much more challenging it would be to add this to the decor of my living room. <br />
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Her plan was an A or B plan. Plan A we give him steroids to help with the swelling of his airway and send him home again hoping he grows and his airway expands. Plan B would be to hold tight for another few weeks to a month to help him grow on the Heliox and hoping that his airway expands. I disliked both plans for valid reasons, but ultimately the goal would be to get home and STAY home so I chose Plan B. <br />
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We will see what tomorrow brings...as for now we rest :)<br />
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<br />Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-30783563149732870372014-03-08T12:02:00.003-08:002014-03-08T12:02:36.371-08:00A is for Aspiration!Cohen was finally extubated (breathing tube came out) yesterday and it was a huge celebration among us and also the hospital staff. Nurses and doctors were coming around to see his handsome face and seemed genuinely excited for us and for him. I stayed at home yesterday with Isla for the first time in a few weeks and it was refreshing to get away from the hospital and the medical life I had grown accustomed to seeing for the past 4 months. Chicago had finally decided to have a "heatwave" of 40 degrees. Isla and I took full advantage of it and played with chalk outside for a bit, took the dog for a long walk (Isla took the dog for a walk), and went to our neighborhood park for the first time since October. It was amazing to have no cares or worries in my mind for a few hours and to spend some quality time with Isla. <br />
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Ryan stayed at the hospital with Cohen and was able to hold the little guy for the first time in over a week. We had all been through so much it was heartwarming to hold him. His connection to us for the past week has only been through head rubs and hand holds for the most part due to being intubated, so being able to hold all 9 pounds of him sure made the difference in our moods! <br />
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Ryan attended a Care Conference that we had scheduled with a few of the pulmonary doctors who knew Cohen very well and also some of the residents and fellows on staff this week. The reason for the conference was because it didn't seem that everyone was on the same page again. We again had too many cooks in the kitchen and some were trying to decide upon pretty invasive procedures. Now that Cohen was stable off the ventilator, we still had no answers. It was like being back to ground zero and we had the same level of frustration as we have had for each hospitalization. Why was he breathing so fast? Why was he needing more oxygen? Why was our baby boy seeming to be getting worse with age when we were told that growth was the best thing for all of his medical struggles?<br />
All last week we were told that he may in fact have an interstitial lung disease. There are a variety of diseases and each comes with its own prognosis and treatments. Some are genetic while others are not and can be tested via blood or lung biopsy. We sent out blood that will take a few weeks at least to get back results of any rare genetic lung diseases. There was talk all week of doing a lung biopsy and at this point Ryan and I were both on board with going through with the procedure. As much as we didn't want to put Cohen through any more pokes or sedation, we wanted answers for him! Not having a diagnosis at this point has only made things more scary, more complicated, and worse for Cohen. It is always true that once you receive a diagnosis your life will only improve from there because your medical treatment can be specific and applicable to the diagnosis. Besides having DiGeorge, Cohen still had this unexplained breathing issue that has now ended having us return to the hospital again for the forth time. The reason the tube was taken out was because he was truly doing better, not needing the support and the argument regarding whether to do the biopsy was still out on the table.<br />
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The doctors brought up at the meeting that he may possibly have an H Type Fistula. It is an abnormal connection between the trachea and esophagus. It is shaped like an H and usually can cause food to leave the esophagus and travel across and down into the lungs much easier than if it weren't present.<br />
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If Cohen has this it can be identified and usually surgically repaired to improve chances of aspiration. We were back to my favorite word again...ASPIRATION! The doctors were thinking that chronic aspiration, even though never proven in Cohen and through multiple reflux meds and procedures, that can cause significant lung damage. After reading about it, it was interesting to come across that babies that do have this in utero, tend to not swallow and it can lead to the mother having polyhydramnios (extra amniotic fluid because the baby isn't swallowing it in utero), which I had while pregnant. <br />
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We are waiting till next week to perform that test to see if he in fact does have this. If he does, it would be a huge relief because it is a relatively easy procedure and could fix a lot of the difficulties Cohen is having. In the meantime, we are trying to keep his breathing under control and keeping him calm. He seems to have a bit of swelling due to being intubated and is also going through withdrawls from the sedatives. He is receiving other medications to help with the withdrawls, but it is not uncommon for children that have been on those sedatives for awhile to go through them. <br />
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Right now he is sleeping comfortably and enjoying his hands being free again to spread out! It is so nice to see him without a bunch of stuff on his face and he is so peaceful.<br />
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<br />Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com2tag:blogger.com,1999:blog-5613957868277863578.post-50188346091182459142014-03-03T19:15:00.003-08:002014-03-03T19:15:38.529-08:00CODE BLUE!Sorry for the very delayed post, but the past week has been an emotional roller coaster and I haven't been able to even breathe for a minute to update the blog. Cohen is finally stable now but it was a bumpy couple of days so let me explain...<div>
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Last Wednesday, the doctors decided we would switch Cohen's gtube to a gjtube. What this would mean was he would be fed in his small intestines instead of his stomach since that may have been causing the spit up therefore leading to the scariness that occurred on Tuesday with Ryan and I. He had been doing ok that day but seemed to have a slight cough and was occasionally "choking" on what seemed like saliva. When this would happen, his oxygen would drop to the 80's which was a very new thing for him because he always tended to be in the 90's for the most part. </div>
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At around 3:30 two nurses came upstairs to his room and the three of us wheeled Cohen in his little bed to the elevator. As we were getting on the elevator, he began to cough and seemed like he was having some trouble getting the spit up. The travel monitor began to make sounds and the nurses who were with me started to get a bit nervous. They pushed his bed quickly down the hallway and began talking about how they needed to find suction. They kept repeating this and then one said, "Get him into a room now with suction!" Where we were in the hospital it seemed very isolated and empty. We were going down for a routine procedure in the imaging room, not an operating room. They pushed his bed quickly into a bright room and tried attaching the oxygen mask to his face. I stood back with my body against the wall of the room and was paralyzed. No thoughts were going through my mind, I couldn't talk and for a second felt like I had stopped breathing. Another nurse came in and asked if they needed help. The look in their eyes said it all and she pushed THE BUTTON....the CODE BLUE BUTTON! I knew what this button meant because I have seen it before living in the hospital for the past few months but never in my room. Usually nurses, doctors, residents, fellows, whoever is around when they hear the signal going skipping down the halls to the patients room and flood in without any purpose but to be there in case they are needed. A nurse turned to me and said, "Everything is ok, but he's needing a little extra help, so we are going to get some. There will be a bunch of people coming into the room in a minute so I don't want to alarm you." Alarm me? I was for some reason speechless and had no emotions. I continued to stand there as I watched the back of Cohen's neck while they help him upright on his bed turn slightly blue and that was enough for me to leave. </div>
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As I walked into the hall in utter shock, about 15 doctors and nurses were running past me. A receptionist on the floor led me to a room for me to wait. Meanwhile the doctor that was going to perform the gj procedure came to meet me apparently unaware of what was happening. He began to speak about the procedure and what was involved. Apparently he had no idea because as I began to cry a few nurses rushed in to let me know that he was not coming back up on his own and they would need to put in a breathing tube to help him. This was a nightmare! I called Ryan as quick as I could to let him know the news. </div>
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After about 15 minutes they said they had the tube in and he wasn't quite stable but they needed to get him back up in the room where they had everything readily available. I followed them closely walking behind and only seeing the top of Cohen's head. The nurse was "hand-bagging" him meaning pushing a bag to keep his lungs inflating since they needed to hook up the ventilator once he returned to his room. Once we arrived back at his room 1632, it was nothing but more chaos. Cohen's IV had fallen out and even more nurses came to assist. They pushed a cart right up against his room wall that had every drug imaginable and as I stood there waiting for Ryan to come meet me, they began to pull up various medicines into syringes. There was so much activity and it happened so fast it is hard to say what exactly happened in those 20 minutes but they were finally able to get an IV into both of his feet so that they could give him some pain medicine and sedation. He was finally somewhat stable but the doctors were very worried about how much support he needed from the ventilator at the time, it almost seemed like his lungs needed a lot of support to keep them open. He was heavily sedated that night.</div>
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The following day he had various moments of huge desaturations where he was again needed to be hand-bagged to bring him back up. Through Thursday and Friday his desaturations increased and it was taking the doctors more to pull him out of it. Code Blue happened three more times! </div>
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There was a follow-up echo done of his heart and it seemed as if he was having pulminary hypertension. Up until this point, Cohen still had a small hole in his heart, but his heart was functioning great! During the echo they were able to see that occasionally the blood was reversing directions which was not good. This meant that instead of blood going from the heart to the lungs it was reversing, causing there to be a lack of oxygen in his lungs and making him have these huge desaturations. After the second one, they decided it would be best to paralyze him. For over 24 hours, Cohen was unable to move anything for his own safety so that he would not be breathing over the ventilator. </div>
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On Friday they sent off usual blood work and determined that his hemoglobin was very low so he endured his first blood transfusion. This helped his numbers increase and it seemed to help him in general with dealing with the breathing tube. They also decided it would be best for him to still get the gj so he went downstairs again but this time with two anesthesiologists. They made sure to keep him paralyzed for even this minor procedure because he seemed to desaturate from very small upsets. The doctors also wanted to get a central line put in. This is like an IV but only longer and put into a larger vein (artery) which leads to the heart. The good thing about doing this was the nurses/docs would be able to pull blood from it without poking him each time and also it would stay in! Over the next day, he became slightly more stable, and they tried to decrease the support from the ventilator. During most of the weekend he was doing better and after getting the gj tube put in, he was able to finally eat!</div>
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Today we discussed why he has begun to have pulminary hypertension. THis is usually a diagnosis that is secondary and caused from something else. There was most likely something else that was causing Cohen to have this, act this way, and need the increased support from the ventilator. The pulminologists now think that Cohen may have a rare lung disease. This is what I have thought all along and though I'm not a doctor, my "mom instinct" has always thought that due to his increased need for oxygen, the sound of his breathing, and the increased work of breathing. They decided to send some more blood to help determine if he has a rare genetic lung disease (which will take weeks-month to hear back about). But at this point they are also considering doing a lung biopsy to determine whether or not they can use the tissues collected to look for other lung issues. </div>
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This is again another waiting game but I feel more confident now that things are starting to show and hopefully pointing the doctors in the right direction. </div>
Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com1tag:blogger.com,1999:blog-5613957868277863578.post-23781287623423555122014-02-26T10:24:00.004-08:002014-02-26T10:24:58.089-08:00Home Away from Home!<div class="MsoNormal">
Things were going well at home.<span style="mso-spacerun: yes;"> </span>We were getting into the rthythm of being
home with two children and trying to meet each of their own unique needs.<span style="mso-spacerun: yes;"> </span>Isla was beginning to have a hard time
adjusting to less attention and trying to understand Cohen’s needs and special
equipment.<span style="mso-spacerun: yes;"> </span>Cohen was doing great with
his new and improved high-flow system and was breathing so much easier and
QUIETER!!<span style="mso-spacerun: yes;"> </span>Last Thursday we had his
pediatrician check-up and he was gaining good weight as well, a little under 9
pounds.<span style="mso-spacerun: yes;"> </span>His pediatrician said once he
gained to being 9 pounds, he would be able to increase his rate of his feeding
tube by 1 ml!! It’s the little things we celebrate these days.<o:p></o:p></div>
<div class="MsoNormal">
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<div class="MsoNormal">
On Thursday afternoon we noticed his gtube was very loose
and looked to be almost falling out. Sometimes this happens with them because
the balloon inside the stomach tends to get deflated.<span style="mso-spacerun: yes;"> </span>But because he was due for a gtube switch anyway,
we took him into the surgery clinic on Friday and replaced that.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<div class="MsoNormal">
Over the weekend things began to change again.<span style="mso-spacerun: yes;"> </span>Saturday marked his 9<sup>th</sup> day at
home and we were eagerly anticipating it but also dreading it because this was
the day that always marked our return to the ER, return to the hospital, and
return to our other lifestyle.<span style="mso-spacerun: yes;"> </span>On
Saturday night he had three desaturations while on his high flow oxygen.<span style="mso-spacerun: yes;"> </span>Usually we aren’t too worried when the alarm
sounds on his monitor, but because he was dead asleep we knew that these were
true desaturations.<span style="mso-spacerun: yes;"> </span>He only went into
the low 90’s but this seemed like something had changed in his body because he
was on the high flow oxygen support so that he would not desaturate.<span style="mso-spacerun: yes;"> </span>The rest of the night was peaceful and he
slept without sending off the monitors.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
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<div class="MsoNormal">
On Monday morning he was very frustrated around 4am and we
could not get him to calm down. He ended up spitting up a few times and began
choking on his spit up.<span style="mso-spacerun: yes;"> </span>As most newborns
spit up he was performing like any newborn….but because he was on high flow he
had air pushing his spit up very quickly back down. I rushed to turn down his
oxygen until he was finished but he sounded very flemy afterwards.<span style="mso-spacerun: yes;"> </span>I stopped his feed and called his
pediatrician.<span style="mso-spacerun: yes;"> </span>She suggested we give him
some time to calm his breathing down, since it had raised into the 80’s and
then try to start his food again.<span style="mso-spacerun: yes;"> </span>I did
this and he was fine all morning until the afternoon when he spit up again.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<div class="MsoNormal">
Again on Tuesday morning he spit up.<span style="mso-spacerun: yes;"> </span>We had three doctor appointments scheduled for
the day, a renal ultrasound to check the fluid in his kidneys, a genetic
appointment to ask questions about his diagnosis and a swallow study to see if
he was ready to take food by a bottle.<span style="mso-spacerun: yes;">
</span>Even though he seemed fussy we had to get this kid ready and out the
door by 7:45am.<span style="mso-spacerun: yes;"> </span>As it is always a
process getting any child out the door, Cohen just comes with some extra
equipment and extra steps.<span style="mso-spacerun: yes;"> </span>We were in the
car and ready to leave, having only driven about 100 feet from our driveway and his
monitor began going off in the car.<span style="mso-spacerun: yes;"> </span>His
oxygen was showing 85% and his heart rate was down to around 90.<span style="mso-spacerun: yes;"> </span>Both of these numbers were extremely low for
him.<span style="mso-spacerun: yes;"> </span>Ryan pulled over and I jumped out
of the car to reach him better in the backseat. He was spitting up again but seemed like he was
choking on it.<span style="mso-spacerun: yes;"> </span>The air was pushing it down and he was trying to cough it up. His eyes were looking at me screaming, "HELP!!" We turned the car around
because it was so cold and running with him down the street was not an
option.<span style="mso-spacerun: yes;"> </span>We raced him, his oxygen tank,
and monitor into the house but trying to act as calm as possible in front of
Isla, Caroline (another little girl who comes over often, and our nanny Kelli.) They were all sitting down to their breakfast when we rushed in the door. I called my nanny over to see what she thought and her face showed me exactly how she felt. He was blue and his numbers were not looking good. I looked at Ryan and calmly said, "Call 911" as if I was asking him for a glass of water, but really my eyes were screaming at him, trying to mask my worry from Isla. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
The ambulance ride was all a blur but by the time we got to the hospital he was looking a lot better. They did their usual routine of sauntering into our ER room and asking questions, checking medical history, taking vitals...etc. For some reason the moment we stepped foot into the ER, with the waxed tile floors, and plain white hallways, we felt at ease...at home. We know this is not our home, but it has practically become our second home since November and because he has spent more time here than at our actual home, we feel safe here. He has everyone watching out for him, a personal nurse to care for him, and we have time to breathe! Ryan and I joke about how we shouldn't even have to pay our mortgage at this point because we only sleep there..only if that were possible!!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He had a chest xray ordered and a blood gas to check his usual areas of concern. The blood gas came back great, showing relatively normal amounts of CO2 which has always been a big concern for him. The chest xray showed to be a bit hazy and his stomach looked very enlarged, probably due to the high flow he had been receiving. They also performed a gtube study because my thoughts were that ever since his gtube was changed out he was having desaturations at night and spit ups, though I guess it could be a coincidence. The gtube showed regular placement, of course and we were admitted back up to the PICU with our blue wristbands. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
During this past stay at home, Ryan and I had vowed to not cut off our trusty, wrinkled blue wristbands out of superstition. We had done so before and each time ended up back in the hospital, so why not try something new. He has been on the PICU floor now for two days and is breathing very rapidly again, similar to how he has been coming in in the past. He is still on strictly IV fluids until they can get a better sense as to why his breathing is so fast again. I'm not a doctor, as I've said before, but lets see....the kid spit up and was choking, probably aspirated some and now his lungs need time to heal....hmmm..</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It's another waiting game and I'm just hoping it won't be another three week stay and will have minimally invasive tactics necessary to get him home again. But this place is all Cohen knows as home.</div>
Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-3574522855449180472014-02-19T18:28:00.003-08:002014-02-19T18:28:40.279-08:00Home Again...this time for good!We are finally home for the third time in Cohen's short life and feeling more confident that this time will actually be the permanent one..or at least for a bit! After a few more days in the PICU the slew of doctors were able to stabilize his CO2 levels with a higher flow of oxygen. They were thinking that the reason he ended up back at the hospital twice was because while he slept his apnea caused his CO2 levels to build in his body which is why the think he was breathing so hard toward the end of our stays at home. By having him on a higher level of flow, it would hopefully train his body to build up oxygen levels in his body so he would have them on "reserve" for when he was awake and hopefully we would not need to return as soon. But with this new form of treatment, would again mean more appliances to fill up our living room. He would need a high flow system that would supply a faster flow of oxygen but also humidified air so that he could tolerate the higher flow.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDfGjbpPuHXHXKsi9wopnvX8OugNgxMxb6Z6FEkOmX8tW24Tyrxji6GGkcDVCRjBZ28-xCfiXPLga5HCPnIU2lcRBdTSeSWPXLmqZwZUG9UGRer0th74RfNyyqo5fvFkXQ87s25I4VBRQ/s1600/equipment.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDfGjbpPuHXHXKsi9wopnvX8OugNgxMxb6Z6FEkOmX8tW24Tyrxji6GGkcDVCRjBZ28-xCfiXPLga5HCPnIU2lcRBdTSeSWPXLmqZwZUG9UGRer0th74RfNyyqo5fvFkXQ87s25I4VBRQ/s1600/equipment.jpg" height="320" width="240" /></a></div>
<div>
<br />As much as we were excited that this was something they found that worked, I was also annoyed because he really didn't seem to need the oxygen as much as the flow; however, they did not quite have a high flow system for the home yet so this is what needed to happen. </div>
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Based on this new flow, they wanted to see how it would affect his sleep apnea and to make sure nothing else would come apparent when at home, so we performed one more sleep study. Our poor little man had already been through two and would now need to be covered in wires once again, but hopefully the risks would outweigh the benefits and it would give us extra information. But of course...in true fashion, Cohen showed no more changes, which we were happy with.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJJlm0U3u8tckg8oJmhUfQ2gmDDlB9eRZzhUOLelnyKEwzDiQM_GJs6hf6zpWYGNIMMD4PA7Yn_MrmappuPXzgztbAa8NBCIu0Ld2dYjm_8xoUdkA6GgLSkYFn8oymGhOZGxby45X1O0c/s1600/sleep+study.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJJlm0U3u8tckg8oJmhUfQ2gmDDlB9eRZzhUOLelnyKEwzDiQM_GJs6hf6zpWYGNIMMD4PA7Yn_MrmappuPXzgztbAa8NBCIu0Ld2dYjm_8xoUdkA6GgLSkYFn8oymGhOZGxby45X1O0c/s1600/sleep+study.jpg" height="320" width="240" /></a></div>
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Last Thursday (we've been home for 6 days now and trying to get past our popular 9 day home stay) we were discharged from the hospital for the third and hopefully FINAL time for a while at least! It was again a traumatizing experience getting this fragile man to and from the hospital and then setting up the equipment that he would need for the high flow system (shown above). But he must have felt bad for us because as we finally settled into bed around 11:30pm, he slept all night! </div>
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The past 6 days have been so relieving and comforting, even though often chaotic! We needed this break at home to spend time as a family, make memories together and enjoy each others' company. We have cuddled, snuggled, kissed, hugged, cried and cried some more! </div>
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Tears of happiness to finally start our life together, but also tears of fear and sadness of the diagnosis that has still not been given and the fate of our child. We are technically homebound right now since he is on this new system, but have approval from his doctors to venture out of the house a few hours/day on a regular oxygen tank to go to doctor appointments. This has been the hardest part in all of this. Living in a new home with two stories (Ryan's dream come true) and not even able to share experiences together as a family because one of our children is hooked up to two machines upstairs is very upsetting. We have been trying to make the best of it though and are looking into getting a second system and trying to get insurance to cover it for downstairs so we can have a bit of normalcy if we do have to stay indoors for the short term. Trying to explain to Isla and her spunky two-year-old mind that going downstairs is not an option all day long is frustrating and upsetting. We take turns going downstairs with her because she really does love playing down there and are working on a schedule for that.</div>
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Looking forward to his pediatrician appointment tomorrow and hoping for good weight gain!</div>
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Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-70899323920288396942014-02-09T21:00:00.001-08:002014-02-09T21:00:23.026-08:00New Wristband...Blue is the New Purple!<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-size: 13.5pt;">Of course Momma's intuition was correct and this boy passed the PH
probe with flying colors! In fact, he seems to be super NORMAL and showed
no indication of having any reflux so we can finally get him off of those meds
and also rule out reflux as a reason to his breathing. <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<span style="color: black; font-size: 13.5pt;">After finally putting that to rest, docs
still had to dig deeper to figure out why he breaths the way he does. The
pulminology team came by and decided to try him on room air without oxygen to
see if he would change at all. Within a few minutes, he began
desaturating into the 70's but was not even showing signs this was happening.
He, like always, was not turning blue or gasping for air, but then would
steadily increase his breathing again and be back to normal in a few seconds.
<o:p></o:p></span></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<br /></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<span style="color: black; font-size: 13.5pt;">The team had a new concern. What if
this was something that was not controlling the CO2 and O2 levels in his body,
meaning his brain. Your autonomic nervous system (fight or flight
responses) control and regulate how your body does many different things
including regulation of breathing. Sometimes, very rarely, there are
people that do not have this part of their brain working properly. They
cannot regulate these things and in end can die without knowing it's happening.
The genetic disorder is called Congenital Central Hypoventilation
Syndrome. This is a very rare genetic disorder that has only 200 live
cases currently in the world. This syndrome has no cure and is life
threatening if not detected because people that have it need to be on a
ventilator while sleeping. We are hopeful it is not this, but if it is we
will learn to take care of him as best we can. The blood test takes about
two weeks to get back so right now it's just a waiting game. But the doctors
are convinced that we are really reaching for an answer right now and they are
fairly confident that he will not have this diagnosis because he is a rapid
breather not a slow breather. <o:p></o:p></span></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<br /></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<span style="color: black; font-size: 13.5pt;">At the same time we have been pushing all
along to get an MRI of Cohen's brain since that is the only other place we have
yet to look into and really want to rule it out. There was one research
study found online that involved a child that had 22Q and rapid breathing.
The breathing was caused by compression of the spinal cord and was
associated somewhat with the brain stem. The child underwent neurosurgery
and was a slower breather after that. Even though it is traumatizing each
time Cohen has gone under anesthesia, it has been important each time to rule
out things that could be causing him to breathe the way he does. We decided
it was best to do this because otherwise we would always wonder if that was the
area that was causing all of these issues. He was a trooper and again
recovered rather easily from the anesthesia and the MRI was NEGATIVE!! <o:p></o:p></span></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<br /></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<span style="color: black; font-size: 13.5pt;">With having to wait 2 weeks for the
results of the other labs, the team that has been working with us finally
scheduled a Care Conference on Friday for us to all get together, discuss his
progress, and plan for our trip home that would hopefully be sooner rather than
later. As Ryan and I were only anticipating a few doctors, we walked into
a room FULL of people that have at one point in time seen Cohen. A social
worker, parent liaison, a member of the ENT team that did the first
bronchoscopy on Cohen, our nurse, the head resident checking in on us this
week, the Pulminology fellow, the floor manager, a charge nurse, sleep medicine
doctor, and his pediatrician. We felt LOVED! Even though we have had our
ups and downs here over the past 8 weeks on and off, this truly showed us that
we were being well cared for and Cohen was on everyone's mind. <o:p></o:p></span></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<br /></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<span style="color: black; font-size: 13.5pt;">During the meeting we discussed where we
have been, the variety and extensive work up on Cohen, and future plans for
him. The pulminology team really wanted him to try the high flow (not necessarily
even with oxygen) to see if the flow would make a difference in his breathing.
The only way to try this would be to transfer down to the PICU (pediatric
ICU) where they were allowed to have high flow nasal cannula. They would
continue to work with the doctors down below and keep close tabs on him, but
this would be helpful in trying to figure out the best plan for going home.
We would be sad to leave our huge support system but wanted to make
every last attempt during this hospitalization to figure out the best and
safest plan to go home with at this point. <o:p></o:p></span></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<br /></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<span style="color: black; font-size: 13.5pt;">They transferred us down there by
mid-afternoon and we traded in our purple wristbands for shiny new blue ones.
Once again we were settling into a new room and answering every question
possible about his medical history and previous hospitalizations. I felt
like it was Groundhog's Day once again! They were checking his "work
of breathing" and asking us what his "baseline" breathing looked
like. It just seemed like we kept going through this cycle and yet still
no answers.<o:p></o:p></span></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<br /></div>
<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0in; orphans: auto; text-align: start; widows: auto; word-spacing: 0px;">
<span style="color: black; font-size: 13.5pt;">Over the past day or so Cohen has been
doing great in the PICU...still breathing about the same but they have been
experimenting with different levels of flow and oxygen to try to see what is
best for his breathing...hopefully they'll figure it out soon!<o:p></o:p></span></div>
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Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0tag:blogger.com,1999:blog-5613957868277863578.post-46636403377247296212014-02-01T18:17:00.002-08:002014-02-01T18:17:55.824-08:00Bunch of little problems create a big problem...or just time?Yesterday resulted in both good and bad news. Cohen had two procedures to again rule out any other crazy business he had going on in his lungs. This was also the second time he has been put under anesthesia in his short little lifespan. The pulminology doctors performed another bronchoscopy but this time using a more flexible scope to look deeper into his airway, even venturing into the different sections of his lungs. They also squirted in saline and then extracted it to be able to process it in labs for any bacteria or to show proof of aspiration. Meanwhile he also had a CT lung scan. This would help the doctors look more closely at his lung tissue and to see how the air exchange was being processed. <br />
<br />
I waited in the waiting room for what seemed like an eternity, ideas passing through my mind continuously as to why we were doing another procedure and still about to have no answers, because I know this always happened. The two PULM doctors came out after about an hour with smiles on their faces. This told me that he was doing well, but also that they had probably not found anything. And I was correct. Once again our Mystery Man had proven us and the docs wrong. They had found some mild bronchial malasia but nothing that would indicate this rapid and noisy breathing. They also found that he had a anatomical duplication of two lobes in his lungs but again nothing that would cause this breathing. <br />
<br />
We were back to the beginning yet again with no answers! How could this be happening AGAIN??? The pulminologists looked stumped. Another set of specialists that were completely mind-boggled by my son. They explained what they felt to be his diagnosis...at this point..a little bit of everything can make a BIG problem like breathing quickly. <br />
<br />
-He has a little hole in his heart that may not ever need surgery.<br />
-He has a little reflux.<br />
-He has a little bronchial malasia.<br />
-He has a little sleep apnea.<br />
<br />
All of these things very well could be coming together to create a rather large problem. A problem that has been with us since day 1. The more we looked around, the less we found and maybe because it was in front of us the entire time. We have been trying to look for this HUGE discovery, but maybe there never would be that huge discovery because there wasn't even one to find.<br />
<br />
After the disappointing yet happy news, the docs started talking again about discharge...though within a few hours, they had completely changed their opinions, wanting to rule a few more things out to be safe, before we went home. They ran one more sleep study to make sure they hadn't missed anything from about a month ago and then they also decided they would consider measuring the acidity of his stomach acid by performing a PH probe study. In order to do this though, they would need to take him off of his acid blocking medicine for 72 hours to make sure that the study was accurate without any meds affecting the outcome. <br />
<br />
The sleep study went well, if you can say that since Cohen screamed on and off most of the night. We are still waiting the results from that. He had his last dose of medicine yesterday afternoon. Now I expressed my concerns to the resident because taking a kid off of reflux meds who seemed to really need them made me very nervous. I know they needed to do it for the study, but part of me was wondering if he was going to be in agony refluxing continuously with nothing to protect him. <br />
<br />
So when I came to the hospital this morning, I was expecting there to be mayhem with this little guy. He had been off his meds for over 12 hours so I knew I was going to see throwing up, lots of coughing/gagging sounds, painful cries and some desaturations in his oxygen. As I'm writing this though, it is 8pm, almost 18 hours after being off all meds, and the child doesn't seem any different. Hmmmmm..... you may be saying to yourself as I have done all day in my head. But why? Well as I was wondering the same thing, I decided to start looking back at my spreadsheet of Cohen's medical history. This wonderful ideas was given to me by a co-worker (Jessica :)) who told me when things were still very uncertain, to keep a log of his daily events to try to work out solutions from that. <br />
<br />
When I did explore back over the notes, about 10 pages worth at this point, I found the point in his stay when we had returned to the hospital the first time. I had increased his feeds and the reason I brought him in was simply because he had been breathing harder. He had never thrown up at home or shown any more signs of refluxing than previously before. We started his feeds back up and he continued to have desaturations of his oxygen, over and over again. We decided to increase his med dose and add 2 more meds as well as change his food. I can remember back then that even after he had been on these meds for about 1 week he was still having desaturations, making docs and us think he wasn't tolerating the feeds. The interesting thing was though that his breathing remained the same and he still hadn't been throwing up like a typical refluxing baby. But as I read my spreadsheet something jumped off the page. All of these changes had been made prior to us getting the sleep study which determined he had sleep apnea and thus explaining the desaturations. Now push forward about a month. He is being treated for his apnea via the oxygen at night and no longer has desaturations. If my theory was correct, then this boy didn't even have that extreme of reflux as we had thought and this may be just a matter of time...for him to grow...develop...and breathe more easy. If that is the case, I feel terrible for all that I have put him through but at the same time these past months have taught me that medicine is all about finding patterns and coming to a consensus by eliminating possible things. We will know in another day whether or not we will even need to go on with the ph probe and maybe the point of this visit was to get off the reflux meds because he may not even need them. I would be very excited to think that was the case but we will see.<br />
<br />
But please slap me tomorrow if he completely changes overnight and proves me wrong. He has done it many times before!Lindseyhttp://www.blogger.com/profile/07068740620443330019noreply@blogger.com0