Ffion had another ultrasound today in preparation for the stent coming out on Friday. They didn't find anything untoward but have acknowledged that it's a bit of a risk taking the stent out early. However, the other option is to have her on antibiotics for another 4 weeks which they don't want to do either. After Friday she'll need to stay in for 48 hours to have antibiotics but hopefully will be discharged then.
Creatinine was down a little again today at 125 but it's levelling off. They've dropped the sodium chloride but have added iron. I think this juggling of electrolytes is going to be the norm for the next few years.
Had a chat to the nephrologist today who said once she is discharged we will be just monitoring and juggling the numbers until her kidney function starts to go off. He says that is very likely but we won't know when - just have to wait and see. His aim is to schedule a transplant before the kidney function goes off so much she needs dialysis, but she has to be about 3yrs old before that can happen so we may be looking at dialysis before she's 3 as a worst case scenario.
Once Ffion is discharged they are going to arrange for her to have all her childhood jabs in the next couple of months. This is just in case she currently has the best kidney function she's going to have. She'll also get hep B and chicken pox jabs in addition to all the other normal ones.
She's coming home for the day again tomorrow and Wednesday which I shall look forward to :-))
Sally x
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