Monday, September 9, 2013

In limbo...

That's what I feel like.  We are currently in limbo right now.  I haven't been withholding information from you or anything, but today we finally heard from Iowa City.

That's right.  I know you all probably thought we received this call telling us Blake had a donor, but we didn't.  Steph told us.  I waited until today and then called down and gave them, "this is unacceptable that we haven't been called yet.  Why have you not called us?  This is a life changing event that should be high on your priority list."

The plan of attack was supposed to be this:
1. Bladder augmentation surgery - bladder needs to be bigger so that when Blake has a functioning kidney, it can actually hold more than an ounce of pee.
2. 6-8 weeks of recovery from the bladder surgery and at the same time he will have to make the switch to hemo dialysis.  Hemo  dialysis is an in the clinic sort of thing.  Hemo dialysis for pediatric patients is an in Iowa City only sort of thing.  Five days a week.
3. Transplant!

THEN...
After I talked to part of the transplant team today after we got past the ''why have we not been called" stuff and I prodded her on what I needed to do to get the bladder surgery set up she said she sent them a message to call us for a pre-op appointment.  About an hour and a half later, she called me back.

POSSIBLE TURN OF EVENTS...
She noted that the hold up is that the transplant surgeon and the urologist who will be doing the bladder surgery are discussing whether we can do the surgeries at the same time.  The same time. That would mean no hemo.  No five days a week in Iowa City.  On the other hand, for this non-surgeon mom of a kidney kiddo that seems like a huge undertaking and if I'm being honest, scares the crap out of me!!

WE WAIT...
They are planning to make a decision by the end of the week on how to proceed.  If we do both surgeries together, they are thinking the beginning of October.  If they don't, we could do bladder surgery sooner.

We will continue to keep you updated on what we find out. One day at a time...one day at a time...:)

Now faith is confidence in what we hope for and assurance about what we do not see.  Hebrews 11:1

2 comments:

West Marshall said...

Being in limbo is no fun, but making sure the i's are dotted and t's are crossed will make the life changing event a success. Prayers for answers.

teddybearsjourney said...

We will be praying for the uro team and the transplant team. :-)