We have one sick little lady on our hands. Today was possibly the worst day so far. The BEST part about it was all the fluid that drained from her lungs through the chest tube. I believe they got 140-160 mls out!
They started the CRRT (continuous dialysis) and kindly invited us to leave the room while they got that going. Not knowing how her body would react to it, they had 3 doctors in her room and 3 nurses. Fortunately, things went well as they got that going. CRRT can make the body temp drop--and that it did.
About an hour after they had everything settled from the CRRT, her blood pressure dropped dramatically. Back down to 53/20 ish. Soon after that her heart rate dropped down to 60. Add on top of that her temp. dropping to 35.4 and you have some concerned doctors, nurses, and parents. They gave her more of the epi (blood pressure boosting medicine) along with some more fluids--albumen and more red blood cells. I believe that's the 3rd blood transfusion she's had today. The doctor came back and they've been trying to warm this little body up for the past 2 hours. The heater is cranked up in the room, she has multiple warm blankets and pads under and on top of her, and a "bair hugger" blanket that blows warm air directly onto her body. They put warm saline bottles on top of the syringe she is receiving blood from to try to warm it up. They also wadded up the line that the blood is going through and put it in another warm saline bottle to make it as warm before it goes into her. Earlier today we were happy for "cold blood" to bring her fever down and tonight we're trying to make it A.W.A.P (as warm as possible)! They also adjusted a few of her meds to even out some of the other things out of wack.
She didn't show much progress on her temp or the heart rate for quite some time, although the blood pressure did come up with the boost of that medicine. The thing that helped the most was that as the sedition med was starting to wear off, she "woke up." That got her heart rate up! They put her back to sleep quickly and after settling back down, her heart rate has remained around 90. The warming methods eventually kicked in and her temp is now back up to 36.2.
We've had our ups and downs tonight. Right now she is stable again. Other good news is that so far, nothing has shown up positive on the cultures they drew to test for any virus. Hopefully the fever from earlier today is simply her body's way of telling us she's NOT having fun with all of this!
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.
Sunday, October 4, 2009
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3 comments:
Hang in there Skinners. We are praying for Claire. It sounds like she is in very able hands, and what a huge blessing with such modern medical procedures, she can be cared for. Blessings to each of you.
I am so grateful for the updates. I've been thinking about her, and praying for her all day. She is lucky to have you guys for her parents. You guys have such a great positive attitude. The poor surgeon must feel terrible.
Just ran into Mary at Arrowwood. She said she read the update this morning. I am glad little Claire is doing better. Know that we are all continually praying for your sweet little girl!!!!
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