I get asked this lovely question all the time. So many people care about him. It's just wonderful.
The problem is it's complicated. Jack is doing great because he's growing and developing daily. During the day, on most days, Jack is happy and full of energy with a robust appetite. Of course, today and yesterday have been a bit strange but more on that later.
Nights....a whole other story. Nights at our house are well, there's no other way to put this, they're scary. Jack is not doing great at night. He requires up to 24 cm of H2O pressure (trust me that's a lot) just to be able to take in a breath and that's not necessarily a good deep oxygen-filled breath. We add supplemental oxygen most nights. He is very congested at night and he is having awful problems with his reflux. The high pressure air from the Bipap is blowing up his little tummy. It's a crazy cycle and we don't know what comes first so we don't know exactly what to do.
The air quality is not great here right now plus there are a ton of allergens in the air so we (Jack's parents, his ENT, and our family doctor) think that this is at least contributing to Jack's increased congestion. But then there's his reflux. Reflux can cause increased congestion but increased congestion can aggravate reflux especially if Jack is gagging on his secretions. Initially we thought Jack was simply gagging on those secretions which caused him to throw up. We solved that problem by adding an antihistamine and drying up the secretions.That kept him from waking up and throwing up into the mask.
Then, he started just refluxing without making a sound or waking up. The problem with this is that he was not coughing or anything and this stuff could go in his lungs and cause pneumonia or other damage. We realized that his tummy was very gurgly and lo and behold nausea and vomiting is a side effect of the Zyrtec we were giving him! We changed his meds again and the reflux is not coming all the way up but he's coughing again so we don't know if the Claritin is not drying up the secretions well enough or if the reflux is just coming up the back of Jack's throat.
His little tummy continues to blow up. We don't know why he's doing this when he has not done it before. We think it may be because he's swallowing air as he swallows those sinus secretions or swallows back down the reflux. We've started eating much earlier in the evening so Jack has a few hours between eating his big dinner and going to sleep. We've even given him Simethicone to help pass any gas that he may have. The problem here is the air gets pushed into the tummy, the tummy expands, the tummy inhibits movement of the diaphragm so Jack has an even harder time getting air in, the Bipap senses this and increases the air pressure to get the air in and the tummy continues to blow up. See how this can go on and on endlessly?
The past couple of days Jack has not been himself during the day either. He's fussier than normal and not quite as energetic although he had a great time in the pool yesterday evening. Yesterday, we are fairly certain his blood sugar must have dropped pretty low. He had all the classic signs and he perked up after we got some sugar and a little protein into him. Today he's just not his easy going self. Maybe he's just not truly resting well, maybe a hundred other things....
I don't want to be all overly dramatic here. The truth is David and I are not sleeping well for watching and worrying over how Jack will do each night BUT our days are filled with joy and discovery and friends.
So if you ask me how Jack's doing and I pause before answering it's cause I just don't know what to say....he's great but he's also having some scary nights.....