Still Here

It has been a while since I've updated since we are still in the hospital. Noah has had a difficult week. He began spiking fevers again a few days after his temporary line went in. Blood cultures showed a new line infection. Again he wasn't responding to antibiotics. He also began guarding the leg that his femoral line was in and crying in pain when we tried to move it. So again it was decided that this line had to be pulled. Anesthesia put in a peripheral IV (twice, as Noah decided to pull the first one out himself) and tonight he will go back to the O.R. for a new tunneled central line. We take the risk that this line will again become infected, but Noah needs IV access so we do not have much choice. He is still having low grade fevers, but hopefully this will now improve.

We also did a PH study on Noah last Monday to see if he is still refluxing. We do not have the results yet, but it was a miserable experience and Noah wasn't tolerating his feeds well at all. So we have once again taken him off his feeds. Noah's comfort and quality of life is most important. Once we get in a new central line, we will restart full TPN likely on a long term basis, or as long as his liver will tolerate it. The good news is that through all this his blood sugars have stabilized.

Please continue to pray that we will be able to put a plan in place to get Noah home. We need some sun!!

Another Tough Weekend

It's been over 2 weeks now and Noah is still in hospital. Last weekend, he seemed to be improving on the TPN. He finished his week of antibiotics for his line infection on Monday. Then on Wednesday evening Noah began spiking fevers again. New blood cultures were drawn from his central line again and he was restarted on the antibiotics. Turns out he was septic AGAIN!His cultures came back growing both Staph and Strep this time. He continued to spike higher and higher all week and his hemoglobin and platelets continued to drop. On Friday evening he was given a blood transfusion, and on Saturday he really began to deteriorate. So unfortunately, he ended up going the to OR on Saturday afternoon to have that nasty line removed. Within an hour of coming out of surgery, he was improving dramatically! It was tough to lose this line after only having it for such a short amount of time, but it was definately the right decision. The surgeon put in a temporary femoral line. So once Noah is over this infection, he will have to go back to the OR for yet another surgery to have a new permanent line put in. Unfortunately, Noah needs his line to live, so although the risks are high, it is still his best chance. A silver lining in all of this, is that his blood sugars seemed to have settled and Noah hasn't had any lows for a week now.

Noah also had an echocardiogram done today to check for clots in his heart. He has another small clot there, so that line would have had to be removed anyways. We do not know yet how long he will need to be treated with IV antibiotics and blood thinners. He also had a gallium scan done to search for any other hidden sources of infection and we are waiting for results. So we do not know yet how long this hospital stay will extend. We are tired and frustrated and desperately hoping for a break from all this. Thank the Lord for those "Noah smiles" that pull us through each day.

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.