48 Hours!

James has now been off oxygen for a full 48 hours!! This means that technically he is ready to go home ... but seeing as the doctors are FINALLY getting there act together and doing some investigation ... home is still at least a few days away. This is probably good since his oxygen levels are not completely ideal and he continues to have bouts where he drops below acceptable discharge levels (92%). Previously James did not have trouble at nights, but both Friday and Sunday night his SATs dropped into the high 80's. On Friday night they had to put him back on oxygen until the morning, last night after resettling into a deep sleep his SATs came back up to 93/94%. As soon as he woke up and got going they jumped into the 98-100%. As long as he is only semi-active or sitting his SATs are doing wonderful, once he becomes active they drop to 90%, resting for a short period brings them back in line. So we're definitely improving, but it will take time to get more consistent ideal SATs.

Our new Team seems to be a bit more active at trying to sort through the various concerns with James. At this point we're told that they would like to do the Swallow Video Study and to have the Meeting of the Minds after they get the results as this is a somewhat important tests. Important, but unfortunately I really doubt his cooperation. We have not gotten a confirmation on when the test will be done, but it will likely be tomorrow. There seems to have been a shift in concerns now that his lungs are doing better ... altho still some connection to the lungs. The Swallow Video will help with the reflux/aspiration questions which are related to the lungs, but as well they are looking at his lack of growth in the last months and have concern over his continual diarrhea.

The diarrhea is something we have just accepted as part of James and his stools are actually doing quite well considering what he's gone through in the last year and the fact that he's been on antibiotics. They have said that it could just be something that he has and will have, but they want to check again to make sure nothing is being missed. The biggest question right now is whether the continual diarrhea is connected to the lack of weight gain. Also possible, but considering he's had this his entire life, and a lot of the time much worse then now, I'm not so sure it's the cause of the sudden lack of growth.

But James is full of energy and having lots of fun now that he's allowed out of his room. As much as we want answers ... Mom on the other hand is quite ready to go home answers ... hopefully not too much longer.