Thursday Night Update from Sally

Hi everyone,

Dye scan day!! Ffion's had her scan this morning. They did it twice as they got a result which showed a completely blocked kidney first time round. We know that can't be right as she's weeing so something is getting through. The second scan showed a partial obstruction in the ureter right up near the kidney which is hindering the kidney's ability to drain. Although this was the result we were hoping for, there is a big 'BUT' coming up... Unfortunately her creatinine levels have not fallen at all, which they should have done in 48 hours since her nephrostomy was done, if they were going to at all.

So it looks like we have a picture of both a partly blocked kidney and a poorly working one. So the plan appears to be this...
1. Operate to remove the blockage within 6 weeks. The exact timing for this will be discussed at a case review on Monday. They would like her to weigh a little bit more first, but can't leave the nephrostomy tube in for longer than that due to risk of infection.
2. Monitor after that to see what the kidney can do once it's not hindered by the blockage and take it from there.

Today was the first day that the dreaded 'T' word...transplant... was mentioned as a possibility :-(

No joy with the bottle feeding today - her drip feeds were reduced from continuous to 2 hourly intervals in an attempt to make her a bit hungry. She doesn't seem to know how to suck. They are going to keep trying but the speech therapist may have to get involved to help with this.

We now know it's very unlikely that Ffion will be coming home until the definitive operation is done so we're looking at several weeks. We'll know a bit more of a concrete plan on Monday, so the blog will go a little bit quieter until then, and probably after. We're going to take Fraser in to see her tomorrow and one of us will try and get in most days for a cuddle. We are taking time now to work out how we deal with this on a practical level with as little disruption to Fraser as possible.

Thank you for all your prayers and support. I realise I don't sound very positive today but we're bound to have good days and bad along this journey and not being able to take my little girl home for ages has made me feel quite low. A weekend with Fraser will help though and she's absolutely in the best hands - thank you God.