Our Quiverfull - One step forward, two steps backward

Oct. 9, 2007

One step forward, two steps backward

I'm sorry about not updating yesterday. We had so many phone calls with our doctor, the GI doctor's office, and our home health nurse that we didn't know until about 9 PM whether Noah would have to go to the hospital or not.

Long story short, our doctor suggested letting Noah try to get back on his g-tube feedings for a little while to see how he did. He hadn't had anything in his tummy all night or all morning, so we hooked him up with the goal of running the feeding for about an hour to see how he did. After 45 minutes he was obviously queasy and spitting up, so we turned of the pump. Noah's home health nurse was already scheduled to come out and draw blood for his weekly labs yesterday, so we all wanted to see if those labs gave us a clue of what was going on. They ended up running some of the labs STAT and when our nurse got the results last night she called the GI doctor who was on call. Everything looked pretty good except his hemoglobin and hematocrit which were very, very low. He is taking iron through his g-tube, but even so his hemoglobin has dropped since he was discharged. It was low when he was discharged, so the doctor wasn't terribly concerned - if it had gotten this low from a normal value we would suspect an emergency of some sort. He isn't quite low enough to need a transfusion, and I don't honestly understand why he is so low and still falling.

We decided to run pedialyte through his tube at just 5 mls/hr instead of his usual 10 mls/hr and see how he did overnight. He didn't throw up, but since he was only getting 1 teaspoon per hour at a drip we didn't anticipate that he would. He did show a number of signs that the feeding was stressing him physically, so our GI doctor decided that the best thing to do is simply to stop all g-tube feedings and adjust his TPN to provide all of his calories and fluids. This really made me sad, to be honest. We had hoped to sloooowwwly increase his g-tube feedings and reduce his TPN, so this is a real setback. I don't know why he is getting LESS tolerant of his feedings, and I can only pray that this is just some temporary setback instead of a progressive issue.

Now that he is allowed to pick up and sample finger foods or tiny bites of food from our plates, he has figured out that food can be a fun thing. All day yesterday the poor little guy cried when he saw his high chair. He is on total gut rest for another 24 hours, then he can try some bits of cereal and things again. He only eats a teeny bit, but is very proud of himself. I hope he can continue to tolerate that because it brings him so much joy and satisfaction. We had to take turns holding him in the living room during dinner last night because he cried so hard at the sight of the food.

I didn't mention that we still don't have an answer on the blood pressure. It is still high, and we are seeing a kidney doctor on Monday, but the general opinion of the doctors is that it is due to disease progression. He is also seeing his GI doctor on Monday. One big question is what to do with his iron supplement. If he isn't getting anything else in his tummy, it could cause stomach upset for us to put the iron in his g-tube, but it isn't a simple matter to get extra iron in the TPN either. I wish so much we could just get it in his TPN so we could guarantee that he had it even if he couldn't take it in his stomach. I don't like for him to be off of it for even a little while since he is so anemic.

Jeff and I were talking about a favorite song the other day and how well it captures how we feel about this situation. I think that today it speaks more eloquently than I can, so i am going to put it here. We can praise God even in these hard days because of Who He is,and we can praise Him because He never changes.

Love,

Kate

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Comments

Oct. 9, 2007 - Hurting for you all

Posted by InfertilityMom

Your posts are always so full of praise and victory in Christ, and such an encouragement to read! Yet my heart aches for Noah and for your Mommy/Daddy hearts as you watch him through this journey. Praying comfort for him and God's continued sustaining peace, strength and grace for your whole family today! {{{hugs}}}