From bad to worse

Sorry we didn't post this weekend, but a lot has been going on. On Friday, it appeared to be a fairly good day. Ryan's echocardiogram showed that his heart effusion was a bit smaller, so the cardiologist was no longer recommending a tap. The odd thing was that Ryan had been increasingly lethargic or "floppy" as the week progressed, despite being weaned off almost off of his sedating medications. In fact, on Thursday and Friday, I spent a good part of the day trying to keep him "awake" by doing things that he doesn't like too much, like his passive range of motion exercises. When I wouldn't do this, his oxygen saturation would drop, his pupils would go pinpoint, and his heart rate would slow down considerably. In other words, it was as if he were passing out. Dr. A believed that the only explanation for this could be that Ryan was becoming ultra-sensitive to whatever sedatives he was still on because of his underlying brain condition. Well, unfortunately, he was wrong.

On Friday evening, Dr. Graham stopped by and I discussed the week's developments with him. I told him I was puzzled that Ryan was more and more sedated as the week progress despite receiving less and less sedation. I didn't understand how this was possible. Dr. Graham immediately suspected Ryan's high sodium level. It looks like he was spot on, as Ryan's sodium level began to climb over the next day or so to dangerous levels. Although this seems like an easily correctible condition, it is not. If the sodium levels are decreased too quickly, it's very dangerous.

As the doctors worked to reduce Ryan's sodium levels, other things went wrong. His potassium level spiked, his glucose level went up, and his creatinine began climbing. The worst thing that happened -- and the thing that puts us where we are today -- is that Ryan began requiring more and more oxygen to keep his saturation level up. Whereas in the middle of last week he was requiring only 35% oxygen, as of last night, he was up to 95% and was increased to 100% this morning. Even at 100%, his saturation level is barely acceptable.

As we have asked ourselves and the doctors what in the hell happened in such a short period of time, it has become clear that Ryan's sodium level made him so lethargic that he was taking shallower and shallower breaths. This allowed the air sacs in his lungs to collapse or remain collapsed, despite the help of the BiPap machine. Now, although his sodium level is slowly decreasing, he does not have the strength to reopen those air sacs, and enough of his lungs are compromised that he no longer can get sufficient oxygen.

Our only choice at this point is to watch Ryan slowly lose his ability to breathe or to put him on a ventilator, with the hope that he will get strong enough at some point to go off. Last week, when the doctors thought he would die from pneumonia (which we now know he does not have), they told us that if Ryan went on a ventilator, he would never come off. We decided that we did not want that for him. This time, however, they believe the circumstances are much different, and that Ryan has at least a decent chance of overcoming his lung problems with a ventilator, and still coming off. One of the many dangers this presents is that he would have to go to the pediatric ICU -- full of sick children -- with absolutely no white counts. We will be meeting with Drs. Graham and Andreansky, a pulmonologist, and an ICU doctor this afternoon to make our decision. At this point, we have very few choices left.