Cardiology went well yesterday. Her echo looked great, despite the fact that she threw up all over the place during it. Kaidence's s ANC was up to 1 (1,000) with the help of the Neupogen shots that Mike has been giving to her every night. The doctors are pleased. Last night was the last shot he had to give and they will let her go on her own this weekend. We will see what happens next week. I am not a fan of the waiting game. Kaidence's cath and procedure on her LPA are coming up as well. We were able to finaly meet little Noah. He is another transplant kiddo. I loved talking with his mom. It makes you feel like you are not alone as you take this new road in life. He is such a cutie. His blog is linked to mine off to the left side of the page.
Please remember to pray for Baby Gracie!
Danny's Birthday
4 weeks ago
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6 comments:
Thanks for the invite to your house. It would be a long commute for jeremy everyday. thanks for the thought
Just read your blog from a link at Annabelle's. My daughter had a transplant at 8 months old after her 2nd surgery with HLHS. She is now 2 years out. I am glad that your daughter is doing well. I am not sure of the state that you are in, but just wanted to suggest TEFRA as an insurance option. Is that available to you?
Hey Shantelle-
You know all about me and finding recources... Well, I think I may have found one to offset her meds... its called needymeds.com check into if they have a program that might help even a little...Brynn
Shauntelle, It was SO wonderful to finally meet you and Kaidence too!!
I'm glad to hear her numbers are better. I'm sure Marian and Emily won't apprecite me mentioning this, but PCMC really does keep their cyclo levels SO high. Denver's transplant program (which is MUCH more experienced) keeps it much lower. With the old test, Noah would be at 100-150 (and 150-200 under 6 months post transplant) but with the new test and since he is over 6 months we are keeping him about 80-90. That works out to be about 130-180 or so.
I think it might be worth looking into that they are keeping her levels too high. When I asked Emily how they determined their levels, they said they went off the adult programs here in Utah, and Adults need MUCH higher levels.
Just a thought, but hopefully you get things figured out soon. That first year post transplant is always rough as their little bodies adjust to all the strong meds. We are 9 months post transplant and Noah is just barely getting things normaled out.
Much Love,
Crystal
I am glad to hear that Kaidence is doing better. I worry about her and you guys, but know that there are so many praying in your behalf and that the Lord does truly look out for us. I hope her numbers continue to rise!I was showing pictures to my sister and my best friend Courtney that works up on the PICU. They could not believe how big she is getting and my sister kept going, "ohh, she is so cute!" I had to agree there too!
I am so glad that things went well. We keep you guys in our thoughts and prayers constantly. You all are an inspiration to all of us.
((HUGS!!))
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