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.


Friday, September 3, 2010

Sept 3

We spent another long day at the hospital today. Claire had to do some blood work before she received the antibiotic...but we had to wait for the results of the blood work before they knew for sure if she should get the medicine. So we waited...and of course, it took longer than usual...and after the result came back, they determined she indeed needed the medicine that takes 2 1/2 hours to go in. Thank goodness for the video-on-demand function on the hospital tv's. Claire and Benson watched veggi-tales, The pirates who don't do anything for about the 10th time. It's by far their favorite hospital time-passer.

Unfortunately, we also found out today that Claire has a urine infection. I don't know if this is related to the BK virus she has or not...but she also will need an antibiotic for that so it doesn't turn into an UTI. I'm grateful they found it before it caused her discomfort. And I'm also grateful she can receive this antibiotic through her g-tube at home. It has to be given 4 x's a day for 10 days....so now we'll be giving Claire meds at 10am, 11am, 3pm, 7pm, 10pm, and 3am. And Benson's meds before breakfast, after breakfast, 3pm, before dinner, and after dinner. No wonder I feel like all I do some days is fill up syringes, wash them, and fill them again. Keeping it positive...at least we have medicine that works for the problems we have!!!

1 comment:

Unknown said...

Sounds like you are pretty busy these days. But it is all worth it. You have two fabulous kids. And we love you all.