Still at TCH....

Sorry everyone for not keeping this more updated... We are still here at Children's Hospital in Denver. Fortunately, James got through his pneumonia and is sounding MUCH better. His oxygen requirement has gone back to normal and we are suctioning his nose A LOT less...

Unfortunately, James' sodium levels have been too low. They are calling it SIADH, which stands for Syndrome of Inadequate Anti-Diuretic Hormone. His little body is retaining fluid and not letting it pass... Sooooo, for the last 3 days, they have been poking him every 3 hours to get blood to check his sodium levels. Saturday morning they came up to normal range, so they increased his food. But by the afternoon his levels had dropped again. If his levels get too low it could cause seizures or even heart failure. But they have really been on top of things and before his numbers could get that low they started giving him sodium chloride. Today his numbers are back in the normal range, so they increased his feedings again about 3 hours ago. His next blood draw is at midnight (1 hour from now) and hopefully his levels are staying the same. If he drops down again we'll have to decrease his food again... He is only getting 15mls of food per hour. That's 3 teaspoons of fluid... The doctor said that it's just enough to keep him hydrated, because even though he is retaining fluid, the sodium levels are telling his body it is dehydrated.

If all goes well they will increase his food slowly over the next day or two and if his sodium levels stay normal and they get him to his goal feeding, which is 43ml/hour, we get to go home.... Our fingers are crossed. I have a lot of faith in my little man, he has pulled through so much, I know he can get through this...