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!
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!