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, October 6, 2009

Oct 6 a.m.

We've had good night and morning here!

Things went really well last night with dialysis. Since midnight, they've been able to pull off 500 ml of fluid! That's great progress and the first day we've been able to really make some headway. She looks much better today and they have taken her off both the blood pressure "boosting" medicines! They really think moving that line from her groin to her neck made a great improvement for the circulation of her blood and of the medicine that was going through it. Her right leg is looking much better now that the line is out from it and the coloring in it has improved dramatically.

She is currently getting a very small amount of nutrition through her IV and they've talked about starting a little bit through her G-Tube within the next day or two when her stomach starts to wake up a bit. They've decided to keep the chest tube in till at least tomorrow. Yesterday it ended up draining 100 mls out from it! They'll evaluate that again tomorrow. The foli catheter for her urine will also come out today.

Good news all around for the princess! Still peacefully sleeping.

5 comments:

Mary said...

I am so HAPPY to hear that she is getting better! She has always been so strong! Hope that you guys all get feeling better from your own sicknesses and that things continue to look up!!!

Ami said...

Hooray for good news!

Anonymous said...

I am SOOOO glad to hear the good news today! What a little trooper that Claire is! I am amazed at her strength...and yours as parents. I will continue to pray for her.

Erica Blackburn Holmes

~adelle said...

I hope you know how much your updates mean to me. I love hearing about what you are experienceing. It keeps my imagination at bay. Hopefully, they will be able to take the breathing tube out tommorw. That would be so nice for HER own comfort. Looks like everything else is going well (under the circumstances!) Hope the rest of the family is healing too. Glad to hear good news.

Wendy Beebe said...

What a marvelous report! So glad to hear they were able to have such success at draining fluid from her little body! Wow, that's A LOT of retension. Poor Claire!
Wish I were there to make homemade chicken soup for your cold, Natalie. I'm sure that your immune system is shot between the lost sleep, emotional stress, etc. etc.!!!
Know you and yours are LOVED and that our prayers are with you.