Our Quiverfull - Another rock, another hard place

May. 14, 2008

Another rock, another hard place

Those of you who have been reading a while know that Noah's TPN puts us between a rock and a hard place. There is no way for him to survive without it as it provides all of his calories and fluids . . . but TPN use causes liver failure. Noah's liver is only showing early, mild problems, but we know that TPN is literally something that he can't live with and he can't live without.

Today we got learned about another rock and another hard place. Noah's labs have been showing that he is dehydrated. His urine output is fine (maybe too much), but his sodium is low and his lips are cracking and bleeding. He has been falling a lot and the low sodium may be to blame. I was surprised that his TPN hadn't been adjusted to compensate for the dehydration, and have been confused as to how he could be dehydrated when he's hooked up to an IV for 14 hours a day. When his nurse came today I pressed her to just explain it all to me. Hydration is a KEY issue for children with mitochondrial diseases, and I wanted to know why we couldn't just hang a bag of saline or D5.5 or something to give his hydration status a boost. Turns out that the issue is Noah's heart. The nurse said that if we give Noah much more IV fluid than he is getting right now, he will go into congestive heart failure. He isn't at the breaking point now, and the nurse feels that his TPN volume will probably be increased if his sodium isn't better when we do his labs Monday, but if this continues we could reach the point that his heart won't allow him to escape dehydration. If he would take fluids by mouth, that would help, but he is almost as unwilling to drink as he is to eat. He will take little bits of drinks of water, but not as much as he used to. Sometimes he begs for his "gup," brings it almost to his mouth, then cries and pushes it away. Something, possibly the C. Diff, is making him very resistant to anything by mouth.

I've got to admit, this has been a hard one for me. Maybe I'm just overwhelmed by everything right now. Jeff got several very generous Lowe's give cards recently and we earmarked them for much-needed yard improvements. We'd been saving all of our Lowe's cards until we would have time to do the yard stuff. We have time now! I'd been excited about shopping for plants and things, but I felt like a zombie walking through Lowe's with Jeff this morning. I think I was partly upset and shocked about Noah, and part of me felt guilty about "buying" things like flowers and grass when we actually need money to live. I know it isn't logical, especially since we can't exactly buy groceries at Lowe's, and since veggies are one of the things we are planting, but it still felt weird.

I want so much to be better able to grasp true reality. That probably sounds flaky or existential or something, but I don't mean it that way. In my head, I know that my emotions and my earthly view of life aren't to be trusted. We've been in God's keeping and care all along. His plan for us is exactly the same as it was when we "felt" like things were going well. Things are no worse now in His eyes. I just can't shake those primal emotional responses of fear and worry sometimes. I have to bring these thoughts into captivity to Christ over and over and over and over. I wish I could bring them into captivity and then lock them up and throw away the key! I know that we have been put in places that we NEED even if we do not WANT to be there, and that all of these things work for our good . . . . so why do I get so scared?

I know we are so blessed and have more to be thankful for than we could list. We belong to an online group for parents of children with mito, and three of those little ones (two about Noah's age) went on to be with the Lord in just the last week and a half or so. Noah is stable and he is home and he is with us right now. I can hold him and watch him sleep and blow bubbles to make him laugh. I know those other mommies would give anything in the whole world to be in my shoes right now.

I read the most wonderful quote by Thornton Wilder the other day. It said, "We can only be said to be alive in those moments when our hearts are conscious of our treasures." I have so many, many treasures and I don't ever want to get to the place where I lose sight of them.

Blessings,
Kate

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May. 14, 2008 - Untitled Comment

Posted by Hallmark

Ah, Kate. May the Lord grant you wisdom and His unfailing guidance in these difficult things. (Going to go hold one of our own little ones a little closer for a minute, before going back to math lesson.)

Blessings,
Jean