I love having the kids in bed early! Tonight may have been a record: 6:40 pm! Haven't heard a word from them since.
Today I'm going to answer some FAQ about the transplant and all that it entails.
How long the waiting time will be is anyone's guess. It could be tonight. Likely few weeks. Possibly a few months. No one knows. It's a very strange thing to think about because we are basically waiting for a 5-7 year old child to pass away, and for their parents to allow his/her organs to be used to save Clarie's life. I don't necessarily like thinking of it, but that's the reality. You would never wish for someone's child to be taken from them. But since that does happen, at least something positive can come from it. One life is taken from one and given to another. I would find comfort in that, if it was my child that was taken, and I pray that their family will too.
The surgery itself will be around 12 hours. 12 excruciating hours of worry, anxiety, and prayers. It's hard to imagine how we will feel during that time, as we get frequent updates from the nurses. And then seeing her for the first time after it's over will probably be unlike anything we can imagine. I guess you just take it in as it comes. One step at a time.
Benson will stay with a friend for the first day or so. One of the grandma's will come out when we give them the word and will stay with here for a while. Claire will be in-patient in the Pediatric Intensive Care Unit for about 3 weeks. Jared or I will stay with her every day/night she is there. It is expected she will then be treated as an out-patient for up to three months. All of these time frames are estimates and could obviously differ depending on how things go. We probably won't be taking Claire out of the house for at least the first 3 months post transplant, as her immune system will be very weak. She will be on immune suppressant drugs for the rest of her life. These drugs help her body not reject her organs. Because of this, we will always have to be extra careful about her getting sick or anyone around her spreading illness.
She will have to be on dialysis post-transplant to help out her new kidney. Her body is currently so overloaded with oxalate that there is a risk of her having the new kidney fail, because it is trying so hard to get all the oxalate out of her body. Because of this, she will continue dialysis for some time after transplant until her oxalate number lowers sufficiently and the new kidney is able to keep up. It could take anywhere from a few months to years for ALL the oxalate to be removed from her body; but eventually the kidney will be able to do it without the help from dialysis.
We try not to think about this whole process too much....or it would pretty much drive us crazy with worry and anxiety. We just keep taking one day, one hour at a time and take it as it comes!!
Benson and Claire were blessed with a quick recovery from their sickness. We'll check Claire's blood level tomorrow and see if she will need the transfusion or not.
Just hanging out before bed.
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