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.