Clinic was interesting today. Once again we discussed taking the plunge and trying G tube feeds. Seems that we are running into a bit of a brick wall with the GJ feeds (not being able to increase rate or concentration) and it is time to forge ahead and try something new. Low potassium is still an issue, likely from the output coming from his drain. If we could get rid of the constant drainage and be able to feed into his stomach, we could eliminate some issues. We've gotten ourselves into a "catch-22" with trying to fix issues by adding more things and complicating everything even more. So it is time to sit back and re-evaluate. It has been about 2 years since we've tried stomach feeding, so there is no way to know if he would tolerate it unless we take the plunge and give it a try again. This will likely have to be an in hospital trial. It scares me as there is always the risk of aspirations again and the terrible retching we had before. But perhaps he has developed enough to be able to do it now. The shape Noah is in right now though, I refuse to try it until he is looking better though.
We have started a potassium supplement to try and bring his potassium back up, and hopefully help him feel better. For now we are still home...
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We will be praying for that. Actually, I have been for awhile already. We are really praying that his pottasium will come up, and that he will beable to fight whatever this is at home. I will put a prayer chain through today. Love you guys. Hang in there buddy. love granny
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