This morning we've been faced with a more bumps in the road. She spiked a higher fever in the middle of the night, 39.5 C and her blood pressure has continued to drop. These two symptoms lead them to believe she may have an infection. With 3 IVs, 2 lines in each groin, a chest tube, her hemo-dialysis catheter, a breathing tube, and a urine catheter an infection could have gotten in anywhere. They added 3 more antibiotics to cover for whatever infection it might be. With all that said, there still is the possibility that the fever could simply be her body reacting to all the trauma it's going through as well. Either way, she'll be covered with the antibiotics. So far all the cultures they've ran have been negative, but in another day or two we'll know for sure if she does have an infection.
To bring her temp down and because her hemoglobin was down again, they gave her another blood transfusion. The "cold blood" brought her body temp down quickly. They also started her on her regular dialysis, which also helped to bring the temp down. She's now down to 36.5 C.
The next worry this morning was the fluid. She looked and sounded worse this morning than she did last night. A chest x-ray this morning showed that there was quite a bit of fluid around her lungs and they wanted to get that out. They first thought they would have to put in another tube to allow that fluid to drain; but after talking with the surgeon who did the heart surgery, he said that chest tube she has in now should be able to drain the fluid around her lungs. But she needed to be rolled onto her tummy for that to happen. They gave her even stronger sedation meds because she kept waking up when they were rolling her over. One of the meds they gave her actually temporally paralyzed her body, so even if she did wake up, she couldn't move. With her on her tummy, they didn't want the breathing tube to be bothered with her moving her head or her bringing her arms up to grab it.
Good news is that it worked. Fluid started draining quite well from the chest tube and they got A LOT of fluid out of her lungs, without having to put in another tube. They will keep her on her tummy for 6 hours and see how much more fluid will drain and then switch her back over to her back for the next 6 hours. (In the past three hours, the chest tube has drained 120 mls. from her lungs! That is huge!)
Since we are not able to get much fluid off during her regular 3 hour hemo-dialysis (they only got 70 ml off this morning, compared to the 200 ml they were hoping for) they have decided to start her on Continuous Renal Replacement Therapy (CRRT). She hasn't done this type of dialysis before. It is a much 'gentler/slower' type of dialysis that will run 24 hours a day. The hope is to be able to remove fluid slowly over a longer period of time until we're able to get her back down to her normal/dry weight. They plan to start that within the next 2 hours....and just as a guess from the doctor, they believe she may be on that continuously for the next 3 days. They have also started her on another medicine to help boost her blood pressure up.
She most likely won't be able to wake up today.
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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4 comments:
Glad to hear of some good news! That is great that the fluid is draining out of her lungs. It is comforting to know that she is in good hands that know how to help her heal. Thank you for sharing all of your updates...the kids are all praying for little Claire!
Jaren, Natalie, Benson and Claire,
Your strength through all this is amazing. You guys will be in our prayers! If there's ANYTHING we can do, please let us know!
Love you guys!
Jessica Redfield
Hi Guys...
As I read your blog, my thoughts and prayers are with all of you. I'm amazed the doctors have been able to take care of these issues so quickly and successfully.
Talk soon.
Earl
Hi Natalie,
I'm glad to hear things are looking better today. One thing is certain... she is a fighter! What a strong little spirit. Our prayers are with her and your family as you continue this journey.
Tanya
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