Day +283

Hello all,

Well I now have Internet access (thank you Derek and thank you Carl Taylor so much), at the same time I have a rather well boy who needs to be kept busy all the time. I'm not complaining...it is wonderful that Jesse is so well so quickly but it does explain why I have been slow in keeping the blog up to date...I wouldn't want it any other way! Red Ruth visited on Saturday and again this morning; it was lovely to see her. She said she was so happy to be visiting again and that it was wonderful to see Jesse so well, so himself and so happy. And I agree...it is wonderful. To think how ill he was a week ago the recovery he has made is virtually miraculous! I used to think Jesse was very fragile but now I'm pretty certain he is tough as old boots!

As of Friday he had fluid round his lungs, a compressed lower right lung, fluid around his stomach, fluid around his heart, an enlarged ventricle in his heart and a leaky heart valve. All this is very alarming until you understand his circulatory system was pumped with over 2.7 litres of water in one evening 10 days ago in order to save his life and stabilise his blood pressure. The good news is that he is breathing fine on his own and the cardiologists did loads of tests on Friday that suggest this is a temporary state. Jesse will have another chest x-ray on Monday and a heart echo when we leave. I am not too worried about any of this...

We are in limbo at the moment, Jesse desperately needs a new central line. We have opted for a portacath rather than a Hickman line as if it isn't used too much there is no dressing. It is the dressing change that Jesse finds the hardest. The downside is that it only gives single access so if he needs lots of IV treatment he will have to have a cannula. I found out on Friday that the waiting list for this is two weeks; he's been put down as an urgent case but we have no date as yet. I will do all I can tomorrow to push it forward asap. He has to be infection free for two days past finishing antibiotics (on Monday) so Wednesday is the earliest...but they may want 48 hours to do cultures. As we are talking into next week I'll push to go back to the Brighton Hospital until they are ready for us here. I'll keep you posted on our progress.

Jesse is now eating, he still has diarrhoea but only small amounts and no blood. We do have a big problem though, I have been trying to keep him wheat free but all the w/f pasta and rice I have given to the kitchen here comes up massacred so Jesse turns his nose up at it. He has eaten a lot of Rice Krispies and recently I have been rather inventive (albeit at the price of the wheat free option) so I have perfected couscous made with a kettle, cooked gnocchi in the microwave, pitta in the toaster and noodles in a cup...all of which have been well received.

Must go as I'm v tired and am falling asleep...love you all loads xxxxxxxxxxxxxxx