Sunday, July 08, 2007

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.

6 comments:

Anonymous said...

Nichole,
'Just know that we are still holding your precious family in our prayers. We pray that Jesus is holding you very close in His abounding love. Remember to take care of YOU too!
~Brenda Hildebrand

erin said...

hey! we are always praying for Noah. Brad did a fantastic job hosting the birthday party. But I also have to give Kailyn credit on that one because she seemed to have everything very organized.

Christina said...

Hi Nicole,
I'm Christina--Ramona's cousin. Found your blog through Erin M.'s website and have started to read about you and your sweet Noah.
I'll come out of lurking to tell you that I think of your family. I can tell from the blog that you're an amazing mother-all of your kids are so lucky to have you as their mom.
Last summer I spent tons of time at HSC, and I know what you mean about the weather--like I just wished it would get dark at a decent hour so I could watch TV and not think of all the other fun things I was sure everyone else was doing!

But you're right--this is a valley. Times will change. And there are many many more days of summer left--both in this year and in years to come. Noah will stabilize and then you'll be outside gardening and look back on this as a tough time.

I'm praying for you and your family.

rissa said...

Hi Nichole,

Sorry to hear that you guys are back in the hospital. I've been thinking about Noah a lot lately. I pray that he gets better soon so you both can go home. Take care and God bless you all!

~Love you all so much.

-Rissa and family

Anonymous said...

Hi Brad, Nichole and family,Thanks for the update on all that's going on with Noah now.Praying for you that you will know beyond a shadow of a doubt that HE is with you and that HE has a plan.I can understand if you wonder what that plan might be all about as you walk through this incredible deep valley, but we do know that He has promised you NOT to give Noah and you guys more than you can handle. Rest in that. He will keep in perfect peace all those who trust in Him. Auntie Hilda

Anonymous said...

I cvannot begin to imagine how dissapointed you are, and especailly Josh and Kailyn. they need you to be home too. Praying for you, that God would give you some answers, and reveal them to you, soon. Sometimes it seems God is silent, but He knows and understands your pain. I love you, and hurt so much for you. love mom