Well, we had a visit with Dr Al-Akash in Corpus on Tuesday. Nothing changed much. His Suplena has been increased to 2 cans and the pediasure discontinued. I'm so excited about this because it should mean better weight gain. He increased his Aranesp injections to once a week (which reminds me......). I really dislike this shot. It is painful to watch myself give it to him and painful for him. Even with the EMLA cream. He doesn't even notice the growth hormone injections but the Aranesp makes him howl. Must call Jessica and see if she has any tips. I told him I knew he couldn't give me an exact period of time on when he would get his transplant but I asked him if he could give me a round about answer say 2-3 months, 8 or 9 something more specific than "in the future." So, he said he would feel comfortable activating him on the UNOS list at 9.5 kg. So that's about 21ish lbs. And he is now about 19 1/2. So, we're getting awfully close. He said from this point on he would feel comfortable transplanting him if he wasn't tolerating dialysis well. This makes me incredibly happy as it lowers our chances of having to do hemodialysis. I've been worried about this from the start but now I feel I can breathe a bit easier. Now I'm not in nearly as much of a rush. I feel peace and I know it will happen in God's time.
When we were leaving Dr Al-Akash told Jaden not to fall anymore since he had a big sore on his head from falling. To be continued.
Wiring Diagram Switch
2 years ago
2 comments:
Is the Arensep also called Epogen? Aidan has those shots up to three times a week and there is no way to make them better. Unfortunately the preservative in them gives a burning feeling so the Emla cream never works. It does suck to have to give injections... but the Epo is good since it helps build up his red blood cells.
I am glad things are going well!
sounds like it was a good appointment sweety!! You all are getting really close and will be praying its comes closer! (((huggs)))
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