Reality check

Last few weeks were very stresfull.

First kidney and bladder scan, and DMSA test, then waiting for results, then results and burried hopes. and on the end hospital with UTI caused by E coli…

Last time we were in hospital was Christmas Eve, we had training on how to do CIC. since then, for the last 7 months S. was doing great. We get around catheterization, she get used to it ( so much that she tried catherized her teddy bears), and life was good. I started to think we were doing great and forgot that cloaca is with us for life. I honestly fall for it.

Reality check came though.

Kidney scan shown that S. kidneys are ok- no changes since last scan 6 months earlier, ( left kidney dilated more than right one), and bladder scan shown that CIC works well. We had scans before and after CIC and the scans proved that the full bladder (140mls) can be completly empty by catherer. So we will have to carry on with that.

DMSA test was a struggle. specifically getting S. to sleep. She fight terribly. Last time we had to give her chloral hydrate (for MRI) she was tiny, so it was easy.

Results came back. DMSA scan does show some scarring of the kidneys on both sides (top of the right one and top & bottom of the left one).

We have been told by mr Mortell that this is relatively mild and he would not expect it to affect her overall renal function but it is important to keep an eye on it and also confirms the importance of keeping her infection-free. We are helping with this by catheterising S.
I know its mild but its upsetting that there is scarring. This was the only thing that kept me going fot last year and a bit. That everything else is messed up but at least kidneys are ok.

We went for holidays and on last 3days S. wasn’t herself. She vomit and lost her smile and appetite.  Hours after we came back home S. got high fever (38,8C), I took catheter sample of urine and ran to GP. She confirmed trace of blood, protein and leuco. We rushed to our beloved Temple street Hospital where after 1,5h spent on trying to do clean urine catch they confirmed UTI.

We stayed on a ward for a few days on IV with Augumentin and keflexine until senstivity test results came back. Lucky S. Is sensitive to all antibiotics.

Before we came back home S.had another kidney scan that shows improvement.  But it also shown some cysts on the back wall of the bladder.

Will it ever end?

P.S. While i was talking to nephrologist she asked me if im a nurse 🙂

Spending all the time in hospitals,  using med lingo does the trick . no, im not a nurse. I’m just intrested in my kids condition,and like to know all the details 🙂

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