Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.


Tuesday, August 9, 2011

by the way

Claire is having a surgery tomorrow to removed her IVAD port. This is what we've been using to do her blood work and IVs with for over a year now and it has been really convenient to have. The main reason we're taking it out is so we can stop doing the heparin (lovenox) shots. Nearly EVERY DAY since i believe Oct of 2009 we've been doing shots in her tummy or leg to treat and prevent blood clots. She had an ultrasound two weeks ago to check on the previous blood clots she's had around other catheter sites and it was GONE! That's a relief. However we've still had to continue the shots daily to prevent her current port from forming a clot.

Now that we're down to doing blood work once a month, it's worth taking the port out, stopping the daily shots, and doing her blood work in her arm instead. Claire is NOT excited about the idea. She LOVES (and I'm not exaggerating when I used that word) doing blood work in her port. It's "easy peasy" without a blink of fear or worry as far as she's concerned. BUT she HATES when we have to poke her arm for blood work. It's a mental block, because we do use numbing cream so she can't even feel the poke, but she just doesn't like the idea of it!! She's so comfortable with the port that it will take a bit for her to switch her mind frame and decide it's okay through the arm too. She tells us she would rather keep doing shots every day in her stomach/tummy than do blood work once a month in her arm!! That's how serious she is about this!

But since we all know that Claire is amazing, she will eventually decide (hopefully sooner than later) that blood work through the arm can be just as easy peasy! And I'm excited to not have to do give her a shot each morning!

It should be a pretty quick surgery, as they'll just put her asleep, cut open where the port is, and slip it out. It'll still be an ordeal to go through all the anesthesia and such, but we'll survive yet another hospital day!

1 comment:

~adelle said...

Hope the procedure is easy peasy. :) She is a trooper.