Tuesday, August 12, 2014

4 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!)

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.

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:

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.

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.

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.

SLEEP MEDICINE:  We recently had an overnight adventure at the hospital for a follow-up sleep study.  This was again another reminder of how eerie and surreal it feels to be in the hospital.  Nurses, doctors, stale air, winding hallways, were all too familiar.  But this was a scheduled sleep over and hopefully it would lead to positive results (less O2).  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.

SPEECH:  This is by far the most important area to me….maybe I’m being selfish or shallow but to me eating by mouth is something that represents a sense of normalcy.  Although Cohen has many devices hooked up to him, he still remains an active part of the family.  He is able to do most of the things that his sister does.  He visits parks regularly and takes soapy baths at night.  He is able to laugh and squeal, play with his sister on the mat, and enjoy books.  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.  But having a feeding tube is something that does not allow him to experience the same things that we do on a daily basis.  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.  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.  J 

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.  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.  Whether it is for supplementing nutrition, or because they are unable to swallow, feeding tubes help them live and survive.  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.  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.  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.  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.  This has made a world of a difference for him.  He has always been a very ORAL baby putting everything and anything he can grab into his little mouth.  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.  He has worked up to trying: avocado, carrots, papaya, peas, and prunes.  He is very partial to avocados of course!  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.  A reminder, he was less than 1 week old at the time L  Cohen’s biggest difficulty with feeding right now, is he is STUBBORN!  He wants to be in control and put everything into his mouth on his own.  This is great for keeping his interest, although not ideal for getting the calories in there.  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.  The day we can all sit down at the table together and eat a meal will be a very exciting one.  Here is Cohen munching away on some pretzel rods after laughing and screaming trying to get Ryan's attention to hand them over!
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GI, otherwise known as…CLUELESS.  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.  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.  Cohen was taken off reflux meds and then put back on them…then off and then on again.  Recently we had a follow up appointment with them.  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.  They have always been the doctors who I’ve had to convince to make changes, take responsibility, and actually help!  They again emphasized that they were not interested in letting him eat by mouth, even if he were to pass the swallow study.  They were cautious and wanted him to wait until he was fully sitting up unassisted.  This was something I did not take lightly.  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.  They are unwilling to work with us so it is only in our best interest to start looking for an alternative GI doctor. 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!

In crawling position.

I'm 8 months old and it's flying by!


Check out that signature mohawk!









Friday, May 30, 2014

As 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!

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.  :)

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.

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.

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.
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.

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!
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Monday, April 28, 2014

Really...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.

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.
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 !

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 :)

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.

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.  
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.  :(

As for visitors...anyone who wants to come visit us the door is always open and we have an extra bed :)

We'll leave you with a video of Cohen from today.  His newest trick....starting to laugh!
video

Thursday, April 17, 2014

Happy at Home

I'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.

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.

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!

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.


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.


Saturday, April 5, 2014

Moving 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!

 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.

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.

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.

video




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!



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.

Saturday, March 29, 2014

Vacation 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.

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!

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.

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!


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.

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.


He is now sticking out his tongue and smiling on a regular basis (even while dreaming)

video



 and has recently found his mouth with his hands.  These are such huge accomplishments for him!




Friday, March 21, 2014

Vacay 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. 

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.

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.

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.

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.

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. 

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!

Friday, March 14, 2014

I'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!

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.

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.

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!

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 :)

Tuesday, March 11, 2014

Heliox and Withdrawls

Cohen 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.

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.

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.

 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.

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.

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.

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.

We will see what tomorrow brings...as for now we rest :)

Saturday, March 8, 2014

A 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.

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!

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?
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.

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.



 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.

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.

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.


Monday, March 3, 2014

CODE 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...

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.  

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. 

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.  

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.

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!  

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.  

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!

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.  

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.