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.


Saturday, October 10, 2009

Oct 10 a.m.

It hasn't been an easy morning.

Claire is going on 56 hours now with NO sleep. Jared is such a good dad to stay up with her. I don't do well, having my sleeping patterns messed with. But he's been right here with her...all night long! How lucky she is to have such a great dad. Aside from the fact that it is quite amazing that she's been awake for so long, it is so not good for her. We obviously ALL need sleep. And she just can't settle down enough to get it. She is definitely getting less shaky, but they think she has a lot of anxiety and simply can't relax after all the trauma her body has been through. They gave her 2 calming/sleeping meds last night and neither worked. I really hope she gets some sleep soon.

They took out the central IV line that is in her neck. Unfortunately two out of the three lines that were coming from that central line got clotted because the nurse didn't flush them enough or put heparin in them.

I know humans make mistakes. That is simply part of being human. In fact the whole reason we have been through the past week and a half has been because of a human error. But when it comes to little things like flushing a line properly, my tolerance level is starting to drop way low.

Because of this, they didn't want to leave that central line in and decided they would just use the IV that was still in her foot. But things are never that easy. When they were flushing the line in her foot, they found out that IV had come out on it's own and was no longer accessible.

THREE POKES LATER, they finally got another IV put in her right hand. Watching your little one get poked three different times....and watching them 'dig' around under the skin to try to find the vein is so not easy. This IV in her hand better last as long as they need it to!!

The doctor today said the clot in her leg was getting bigger. That was contrary to what one of the other doctors told us yesterday. It is so very important this clot doesn't get bigger. It needs to go away. For those of you praying for sweet Claire (and I know there are A LOT of you), please be very specific in your prayers and pray that the clot in her leg will go away. I know there is great power in prayer.

She still not herself today. Really not herself.

The line they removed from her neck.

5 comments:

Allisha said...

I was up last night with my baby for a little while, and your little family came in to my mind. I can't imagine what you're going through. I pray that you all can get through this soon and be home with your sweet babies. You are in many of our prayers. Hope sweet little Claire can get some sleep soon, and we'll pray for her little leg as well. Hang in there.
With love,
The Moss Family

Neely Fam Page said...

Please hang in there...
I know we hardly know of each other. I heard about your sweetheart little girl through George Ama.
I would fast but that would be hard for me too-being 2 months pregnant. I will however pray for her so much!
Did you put her name through the temple... ? (Are you a member of the LDS church?)
My heart and thoughts go out to you and your family.
I have two children of my own-and the one on the way. They are a blessing and teach us new things everyday about them, life or ourselves.
Hang in there-the Lord is with you and your Clair!

Cordie said...

Your story has touched me, and I think you are amazing people. What trials! I pray that things go well for your two angels!

Philip, Melissa, & Summer said...

We will definitely be praying for that. Hope she gets some sleep soon.

Rebecca said...

We're always thinking of you!!! We love you guys.