Thursday, April 11, 2013

Iowa City (times two)

I'm typing this as we're driving home from Iowa City after a LONG day.  I'm trying to figure out how to organize my thoughts and it's hard.  Because I'm mentally drained.  And overwhelmed.  On Wednesday Aaron went down by himself for his full day of  donor testing.  Thursday, Aaron, Blake and I headed down for Blake stuff.

Aaron Wednesday:  All of Aaron's tests went really well and his labs looked great.  Except for his blood pressure.  It was just over what the donor criteria is.  On Wednesday, in talking with the physician at his general physical, the doctor decided to give Aaron a couple of months to make some changes to his diet and exercise to see if he could lose 10 lbs.  She was optimistic that this would bring his BP down enough and make him a good candidate to be Blake's donor.  The only uncontrollable factor is that because Aaron is adopted, he has no idea about his family history and that could indeed run in his genetics.

Aaron Thursday: He got a call from the surgeon about something they found on his CT scan.  What they found was that a lymph node of his has grown from 3 cm to 6 cm.  Backstory on this: Six years ago Aaron got really sick when we were in MN and ended up being taken to Mayo.  Long story short, after a million tests, it was determined that he has something called Castleman's Syndrome.  Doctors don't know a lot about it.  Anyway, this lymph node of his has grown in size over six years.  None of his labs indicate that anything is wrong, but it is pushing on his right kidney and ureter.  So, he has to have that taken care of and just got crossed off the potential donor list.  Which is a big bummer. :(

Blake ECHO: He was a ROCK STAR!  They had plans to sedate him and I asked if we could try it without and with the help of distractions like bubbles and an iPad, he didn't have to be sedated.  This mama was so, so proud of what a big boy he was.  His results were great!

(Blake during his ECHO)
Blake Nephrology: His BP has been on a rollercoaster this past week, but thankfully Dr. Jetton wasn't overly worried.  We are adding a couple extra cycles to dialysis and hoping that takes care of the issue.  They were very pleased with how much his height shot up the past month - 2.5 cm!!  
(We had time to kill before our last appointment and made a stop at Scheel's)
Blake Urology: This is a cluster.  And that's putting it mildly. We are at a standstill on this until we find Blake a donor.  There is a small (very small) possibility that we will be able to combine his kidney transplant and bladder augmentation surgeries.  That would be so beyond wonderful I can't even tell you!  However, if that is not an option, once we find Blake a donor he will have to have his bladder surgery and then be on hemo dialysis (which requires four trips a week to Iowa City) for two months.  UGH....  Please pray that we can combine these surgeries.  And that we find a donor.  That is most important!!
(Spinning chairs are FUN - post ultrasound)
So to summarize:  Aaron - not a donor.  Bladder - who knows...

**If you guys have any questions, please don't hesitate to ask us!**

No comments: