Wednesday, July 24, 2013

Plan A....bust. Plan B....bust. Plan C....bust.

I've had a few folks ask this week what the plan is now. I figure instead of a few short winded vague facebook posts, it's probably time for a little blog update.  My last post, nearly a month ago, we were on track for Preston to potentially have the nephrectomy this month.  In fact it would have likely been sometime this last week.  As we're learning, things change very quickly in the blink of an eye and things have indeed.

As many of you know my sister was the first to be tested as a donor and she was unfortunately ruled out.  It was the first low blow straight to the you know where.....  Tyler wanted to be the next person to be considered so completed the last of his tests (labs, EKG, sonogram, erays, MRI) and met with several doctors and all determined he would be a good candidate for Preston's donor with the exception of the Kidney Surgeon.  After reviewing Tyler's MRI she had found that Tyler's kidneys were both more suitable for an older larger person because of the number of veins that were coming into the kidneys. Apparently smaller children have fewer vesstles and the worry is that there wouldn't be adequate blood flow to the kidney and it could cause scarring or failure.  One of Tyler's kidneys was way to close to his spinal column with a very short vein and would be too dangerous for Tyler to donate.

So Plan  Totally up for the challenge of being a kidney donor, I immediately scheduled all of my tests and scans and went down last week to Stanford.  All was good with everything and so we were just waiting for the MRI to be reviewed by the surgeon before getting the go ahead.  I received a call from the surgeon this morning saying that my anatomy was very similar to Tyler's with the exception of me having an even shorter vein on my right side, so I would be an even lesser donor candidate than Tyler.  I now know how my sister and Tyler felt, and it sucks.  I honestly feel like I have let Preston down, and that I've let our family down. I was certain that I was going to be the "cure all"....dammit.

So at this point, we're not out of options, we have other family members that are willing to be considered and Preston can also be a recipient of a deceased donor.  In order to do so though, he will need to have already have his kidneys removed and be on dialysis and be "ready to receive". So we may need to make a hard decision here pretty soon on if we proceed with the removal without knowing if we have a viable donor, just in case one MIGHT come available.  I'm not hugely in favor of doing this unless absolutely medically necessary or emergent.  The doctor is pushing us toward this direction, simply because Preston will lose less protein while on dialysis and might possibly grow a little better.  There are of course tons of risks associated with either plan of treatment.

We're feeling a little defeated right now and appreciate all of the prayers and support.  We're beyond ready for a little good news and fewer u-turns.

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