Back in Club Med

Well, we had a wonderful 9 days at home, but on Monday morning, we awoke to get ready for Joshua's 5th birthday party that afternoon. But when I went to unhook Noah's TPN, I noticed that he was breathing pretty hard and he wasn't looking good. Sure enough, he had a fever too. So I frantically raced around to bake some cupcakes for Joshua yet, and make sure Brad knew what he had to do for Joshua's party. Kailyn & Joshua were quite upset that Noah and I had to go, but Noah's breathing was continuing to get worse. So it was with a heavy heart and great disappointment that I took him back to the ER. He was immediately taken into the resus room and given a ventolin and then a vapo mask. This seemed to settle his breathing somewhat. All the big gun antibiotics were started, as they always are with Noah.
Turns out the little guy has grown another new bug in one of his lumens in his central line. He is growing Staphepi in his blue lumen, which has always been our sluggish one. Likely a clot formed in the line and gathered some bugs. Right now we are running antibiotics through that lumen, in hopes that we can clear the line infection up and not have to pull the line. Our ID doctor hasn't decided yet how long we will have to do IV antibiotics for yet.
But unfortunately, we have also come across a new problem. When Noah came into the ER, his blood sugar was very low, which was part of the reason why he looked so bad. It came up after they gave him a good sugar boost into his line. But all week, he continued to drop his sugars despite being continuously tube fed with lots of sugar in his feed. So he was diagnosed with ketotic hypoglycemia. In ketotic hypoglycemia, the body doesn't have enough stored carbohydrates to correct the low blood sugar because its stores are easily depleted. As a result, the body converts fats into usable carbohydrates to meet energy needs. A byproduct of this process is ketones. When ketones build up in the blood, they can lead to serious problems, such as coma. Unfortunately, we haven't been able to find the reason as to why his body is doing this, but it is likely that his gut is just not able to process the sugar, just as he has trouble processing fat. Just when we think we have things figured out with Noah, another piece is thrown into the puzzle. I don't think this is a completely new problem though. When his sugar gets low, he gets sweaty, irritable, tired and pale. We've all seen him do this lots in the past, and we've always said "that's just Noah". So this may have been happening for a while, but he was able to bring his sugar up on his own until now.
So yesterday we started full TPN (both basics and lipids) that runs 24hrs a day, and stopped the tube feeding altogether. His sugars have been fine since starting TPN. Right now this is our short term solution, but this coming week, we will need to figure out a more long term plan so that we can get Noah home again. It is so very hard to be stuck in hospital when the weather is so beautiful outside and there are so many other things we'd rather be doing. Our short time home was just a tease and as Kailyn commented on Monday morning "I hate this!!". And so all we can do is continue to wait and trust that yet again, in this valley, God is here.