ALWAYS SOMETHING ELSE…

Well, it looks like we’re going to limp to the December 2nd transplant date if we’re fortunate enough to actually move forward on that date.  Piper has developed some pretty nasty nosebleeds from the cold, dry air and the feeding tube in her nose.  The fear is that with the blood loss, her hemoglobin level will be too low to move forward, so we are doing all we can to stop the bloody noses.  After dialysis yesterday, we just couldn’t get her nose to stop bleeding so Erin took her to the hospital last evening.  The doctor got is stopped with some Afrin and some pressure, and the girls were home by 10:30.  Piper didn’t really eat much yesterday so we had to use two bags of formula with the feeding tube last night.  That kind of sucks because the alarm for the first empty bag went off at 2 am, and then the alarm for the second empty bag went off at 5 am.  In between that, Sophia snuck into our bed and spent the rest of the night with us.  God bless little Harper.  She slept right through it all!

Erin has Piper at an ENT appointment as I type this at 2:09 pm to make sure we’re not dealing with something more than just a dry, bloody nose.  We really don’t want to jeopardize our transplant date as we have made so many arrangements around that date and frankly, we’re just mentally set on December 2nd.  It would take a major adjustment for us to have that pushed back and we’d love to avoid that.  After a while, all of this starts to take a real toll both physically and mentally on ALL of us.

We also had an appointment yesterday with Dr. Dunn, Dr. Kaiser and Cathy McAdams.  Dr. Dunn is the pediatric transplant surgeon and Dr. Kaiser is the head of the pediatric transplant department.  Cathy, of course, is our wonderful transplant coordinator who you all should send flowers to!

It turns out that the pediatric radiologist missed some things on my CT scan that Dr. Frank, the adult transplant surgeon at Jefferson, picked up.  He noticed that I had a second artery leading to my left kidney which they will need to deal with during transplant.  That will require a few extra moves during surgery to disconnect the kidney from me and put it into Piper.  They’ll have to take the extra artery and actually attach it to the main artery to ensure proper blood flow.  They looked at my right kidney as the potential donor kidney, but it too had an extra vein (not arterial) and given that the right kidney is always more difficult to transplant, they’ve officially eliminated that kidney as the transplant kidney.  They’re not concerned, but the existence of this second artery does slightly increase the risk of failure, but only very slightly.  Maybe 2%.  I’m not concerned and the doctors don’t seem concerned but they really wanted to meet with us about it.  I would have been fine with no meeting.  I’m meeting’d out.

Anyway, let’s all pray that her bloody nose remedies itself and her hemoglobin has stayed steady.  I continue to ask God to allow this to move forward on December 2nd, but I recognize that He’s in control and there’s not much I can do to change His will.

Thanks again for all the love and prayers.

Love – Chris and Erin

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