Day +223...we have finally moved!

Hi Guys
Since the last post much has happened. Firstly two days after I wrote last Jesse took a turn down hill again. His poo levels went sky high, he was passing a lot of blood and he stopped eating. So we didn't reduce the steroids as planned as we feared a return of GVHD, but that didn't help. We moved into our new house finally on 4 September, it was hectic and exhausting. The house is lovely and it is wonderful to have somewhere that is really ours again! Derek, Albie, Stan and I packed and moved all the small bits and 4 guys did the big bits, it took us all day. I was surprised at how much there was to do as we have been moving a car load a day for a month!

All the time Derek and I were aware that Jesse wasn't right so we somehow made it to GOS on Wednesday. His symptoms perplexed Paul Veys, as did the fact that Jesse was clearly very well "in himself" as they like to say. He thought of viruses and GVHD but they didn't fit, then at the end of the consultation he came up with the possibility that Jesse had pneumatosis. This is when air gets trapped in between the lining of the bowel. It is caused by high doses of steroids. An X-ray proved it...so we had an answer which was good. The bad news was the treatment is nil by mouth or PEG except clear fluid for 48 hours at first, but if that doesn't work then up to a month of nil by mouth in hospital with IV feeding (TPN). They also halved his steroids. Jesse found those 48 hours very hard, but he did it and was brilliant. Poo levels decreased dramatically but when we introduced his overnight milk feed they increased, so we have taken the feed off and he is doing very well. He is eating loads and is very happy, so please all keep your fingers crossed that this continues.

That's all for now as I am shattered, Derek, Albie and I are having a final push to paint the front of the house (the back and side are done) while the weather is good. A day on scaffolding has wiped me out!
Love to you all,
Claudia
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PS On Saturday Tim, Eva and Zara brought our cat Mr Steed back home, Jesse was thrilled and Bernie screamed a lot!