Still in Hospital!

I have been finding it quite difficult to keep this blog updated lately. Noah is still in hospital...almost 4 weeks now. The team meeting didn't leave us with any great answers. The surgical options sound dismal (the risks are just too high for Noah right now). Our surgeon recommended taking a less aggressive approach, but no one really had any great solution. It was discouraging but it did make our decision regarding surgery easier.
Noah has been on TPN (total paranteral nutrition) for the past 2 1/2 weeks (he is being fed directly into his veins through a central line). It has done absolute wonders for Noah. He has put on an amazing amount of weight (8lbs 10oz) and his energy is unbelievable. He really is a different baby! Unfortunately, we can't do TPN much longer as his liver functions are rapidly climbing (a warning sign that we could end up damaging his liver). So it seems that we are back to where we started. We decided to give jejunum feeding one more try, so yesterday the gj tube was reinserted, along with another tube to try to keep the bile drained off his stomach. The hope is that Noah will have nothing in his stomach to reflux. If this doesn't work, we will probabl have to go back to g-tube feeding and just take Noah home. This will mean taking our chances with aspirations, which is certainly not a great situation, but it may be the only option we have left.

In Hospital

Just a very quick update. Noah is back in hospital. It's been just over a week now. He went in on Monday for another aspiration pneumonia. He was doing better and then yesterday he had a really bad aspiration. He refluxed, turned blue and went unconcious. His respiratory status was very unstable and there was talk about having to intubate again. After a few hours he started to settle down and today he is stable. He now has a new pneumonia from this aspiration and had a central line placed to give him TPN for now. Everyone is at a loss as to what to do for him to stop these aspirations. We had a team meeting planned for Friday and hopefully we can come up with a longer term solution for feeding and keeping his airway safe. I am living at the hospital these days, but will update again when I have a chance.