Quinn’s kidney function is declining at an alarming rate. For those keeping tabs, 3.2 creatinine and 83 BUN. These numbers confirm what a already knew…this well-planned kidney transplant is happening at the right time for her.
The numbers also confirm what I already knew from watching her suffer through the symptoms of kidney failure.
Timing is everything as they say. There is no doubt we’d be talking dialysis if we weren’t already scheduled on Tuesday for her transplant. Yes, we’d be working towards transplant, but with time frames for testing donors we’d be looking at 3 months minimum.
Timing, for historical purposes is here:
12.05.08 – Transplant Evaluation (Quinn’s Creat is about 1.8-2.0 during this period)
12.20.08 – They say the won’t send her for transplant and I seek a 2nd opinion from another center
2.09-3.09 – Go to another center for 2nd opinion that is based on both kidney function and quality of life and they say they would send her to transplant based on current observations (when I say “send” I mean send the paperwork to insurance and start the ball rolling…the donor can’t be tested until this happens)
4.05.09 – Children’s Healthcare decides to send to paper work to insurance for approval. We obtain approval in record time thanks to a case manager named Amber with BCBS.
4.30.09 – Cheryl, our most awesome willing kidney donor, spends the month of April getting the testing started. And on this day she pees in a jug – declaring that she never knew she had to pee so much until she had to collect it.
5.28.09 – Cheryl goes to 2 day donor testing at Emory.
6.10.09 – Quinn’s liver labs are bad, bad and the transplant team rightly holds up transplant until we get liver department clearance.
7.1.09 – Liver doc clears Quinn for kidney transplant. (This doc jokingly says, “You know, the liver is the most important organ.”)
7.10.09 – The donor’s transplant coordinator calls to say that all is good to go and we can start working on schedules.
8.04.09 – Based on Quinn’s school starting we opt to push the transplant a few weeks to give her a chance to start school so she can reap the benefits of her own support system. And on this day, we are scheduled for transplant to happen, quite by chance actually, on her 8th Birthday.
8.05.09-current – We wait. And we watch her kidney numbers climb to a dangerous level. Quinn’s numbers climb again, 2.9 creatinine/92 BUN.
So that is the time line of Quinn’s journey to transplant from evaluation. Nine months. I’d have to say her liver issue slowed us down a bit, but not much, maybe 2 weeks. Even without that I think we’d be at the same place we are today. Six days from her new kidney. May we all stay healthy.
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Hi Julia,
I think this is a great example, first of how we as parents of special needs kids change (become stronger and more confident) as a result of our experiences and also of the power of the parent as the child’s advocate. Thank goodness you fought for Quinn’s transplant when you did. Thanks for your example of strength, courage, and perseverance and for sharing your story with us. We will keep Quinn and your whole family in our thoughts this week as you approach transplant day and also next week.
Praying, praying and praying.
Do you do twitter and will you be doing it on Tuesday? I haven’t ever used it, but will happily sign up so that I know she’s ok by the time I get home which is unfortunately late that night. Who cares about pesky no texting rules?:)
Also, I’d like to post a prayer request for Quinn on my blog. Is that ok? It may not reach a ton of people, but more prayers seem like a good enough thing. If I had computer skills I do not have I’d say you need one of those button things and make it, but well, I know how to type and hit submit/post, and that’s about it. So I guess you can have a pretend button?
I’m glad that you were able to advocate for the care the Quinn needs and that she won’t have to go on dialysis.
not even going to describe the sinking feeling we all experienced with the news of jude’s, and then, andrew’s fevers ONE DAY after being with quinn A LOT over the weekend. i keep thinking, well, the girl currently possesses an intact immune system. and with all the fervor i have, i’m rooting for it. stay healthy, beautiful girl! may a bubble of safety surround you. till tuesday! and beyond.
Yeah, Leslie, THAT IS SOMETHING WE ARE NOT SPEAKING OF IN THIS HOUSE. We shall ignore that it ever happened – that the Quinncess was even breathing the same air as those boys.