Thursday, May 16, 2013

A little more urgency...

Well, Christian just returned from a 5 day trip to Texas Children's resulting from complications with his fistula. We have been experiencing difficulty in accessing his fistula for dialysis and it came to a head last Friday when we could not access it for the third day in a row.

His "lifeline", this fistula in his arm, is failing. And while another can be created, there are issues in going down that road that have both short term and long term serious affects on his long term prognosis. If he would be blessed with a donor kidney instead, it would be a significantly better path for him.

If you would, please talk up Christian's need for a donor kidney. A donor emerging in the next 2-3 months could be huge for him.

In addition to the fistula failing, we also got word that Christian's bone plates appear to be only months away from fusing. This is very difficult news to take for me, since I have always held out hope that a miracle would be found and Christian could grow to a full adult size and have significant bone healing and CNS healing.

The hope for that was in my heart 17 years ago, when we had our first "long term prognosis" meeting with Dr's at Arkansas Children's Hospital. While they were talking about Christian not surviving past 5-10 years, all I had in my heart was peace. When Soliris, the miracle drug that allows him a transplant, was trialed and approved 2 years ago, I could not believe that this hope I held all these years may be coming true.

If you have anyone inquire, the initial screening process is easy. It is a simple blood test that can be performed at any clinic anywhere.

Direct match donors can be B+, B-, O+ and O-. There is also a "chain donation" network that can allow a donor of any bloodtype to start a chain of donations that result in a kidney directly for Christian. It's pretty amazing what is going on in this donation arena in our country.

Check out this story: One donor starts chain of 5 kidney transplants

And this site: Alliance for Paired Donation


Email me here and I can forward the transplant coordinator info at Texas Children's.

Thank you, sincerely.

Hope and love,

Kiki's Dad