Thursday, August 30, 2007

Da Poop Stinks 2

The reduction test came back and it turns out that Noah has an intolerance to carbs. This is why he has such bad diareah and gets so upset when he eats. He doesn't feel good! The GI team said that he most likely got a virus that killed the villi in his intestines. They will eventually regrow but it can take several months. Yes, my mouth hit the floor on this one. Several more months of fussiness, not eating, upset tummy, and the worst diaper rash I have ever seen. I don't think it can be classified as a rash. It looks much more like a burn or open sore. But the only treatment is to continue to feed him through it until he gets better.

They also finally officially confirmed that yes, he does indeed have a Co-Arch. This is where the new Aorta was sewn to the old Aorta. It becomes thin and weak, so he has less blood flow to the lower half of his body and more to his head.... There is a gradient difference of about 20. If it nears 40, that's when they will have to go back in and balloon it.... I pray that doesn't happen. You should all know how I feel about the cath lab by now. There is a possibility that he will outgrow it. So... GET FAT NOAH!! That's my new moto. :)

Other than that, he's doing great. Lilly and Noah both had Feeding Therapy today. It went well. I chatted with another Heart Transplant Mother from Kansas. All I can say about that is.... Transplant is hard.

Shane comes in tonight and then we don't have another Clinic visit until Tuesday due to the Holiday. So hopefully the weekend is uneventful and fun... I'll post another update on Tuesday after his visit so you can stay updated on his progress.

Happy Labor Day! I love and miss you all.


  1. Hi Crystal,
    Congrats on Noah nursing, way to hang in there. I hope that nursing will be able to heal his stomach and his bottom faster.
    Beckham has also started nursing, he does better when he is coming off his pain meds. He also is having some stomach issues. Transplant is hard, but such a blessing at the same time.
    You are amazing doing all you do so far from home. But, what choice is there?
    Beckham's hospital is only 2 hours from Des Moine. Kim hasn't been home for a month, but Nate has taken care of some errands and is back in school now. And between the 2 sets of grandparents and 2 uncles(1 not so helpful). We have been able to take care of Gwen. So I really admire the way you can be away from your husband and family and care for Noah and Lilly in a strange place. It's great that your sister has been able to help out.
    Your in my thoughts and prayer, Brenda Scadlock

  2. No villi=no fun! Gus would have horrible "bile burn" that would leave his rear end being just one huge open, weeping sore. When he would get like this, we would use iLex which had to be special ordered from the pharmacy. Ilex is a super-dooper skin barrier and for Gus it worked perfectly. Just one day after using it, his bottom would be well on it's way to healing...and he would no longer be fussy. You do have to put A LOT of vaseline over the thin coat you put on the tush because it will stick to the diaper...and be a real trouble to detach. I know this from experieince!lol!!


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