Day +287

Sorry not to have updated yesterday...it all got too hectic. Jesse is fine now but had a difficult time. The echo cardiogram showed that the fluid around his heart had almost completely gone and the left ventricle and valve were almost back to normal. So they went ahead with the general anaesthetic and put his new line in. As usual Jesse was a star, he was very relaxed in theatre. He said he didn't mind whether they used his line or a mask to put him to sleep, "you choose!" he said. They said he was the best behaved patient they'd had all week. He happily held the mask and gently went to sleep. I was told it would take 45mins to an hour and a half, but in the end he was gone for two and a half hours. I don't know why it took so long, but I do know that last hour seemed to last ages! We brought him back to the ward asleep, but when he woke soon after he was in terrible pain. Poor little thing cried loudly and solidly for one hour, after 20mins I asked for codeine but it took 40 mins to kick in. He slept for an hour and woke up much better. He didn't talk for a few hours but perked up little by little through the evening. He is ok now, if a bit sore and tender, but it is a relief to have the line in his groin out and the Port-a-cath in.

Today they have moved all Jesse's meds to oral so he has been iv free all day, quite a treat! He'll have TPN each night for the next few days and then I hope we can come home. I am having a bit if a battle at the moment. The dietitian came last night, suggesting that she wanted Jesse to be 18kg before allowing him to be off TPN or his overnight milk feed (which we stopped 7 weeks ago). I argued that I knew he would be fine without the milk feed and that he would be able to gain weight rapidly at home and without TPN. Of course the doctor came this morning with exactly the same story...Jesse last weighed in on Monday at 16.9kg, and I knew he had put on weight because I know him well and could see it, so rather than argue too much I asked the nurse to put Jesse on the scales. When the nurse announced "17.8kg", the doctor stood up to check in disbelief! The nurse gently told him that she could read! So now they haven't got a leg to stand on. After the 13 dough balls Jesse had this afternoon, the two bowls of shreddies, one of rice krispies and the two giant potions of couscous and the two pears he wolfed down today I am pretty certain he will have put on the required 200g to be allowed home... and he still hasn't had supper yet. His poo levels are low and today he had a perfectly formed motion and no blood. We were delighted! Jesse had another abdominal x-ray today to check there is no sign of pneumatosis, frustratingly we have to wait till tomorrow for the results to be checked by a radiographer but I think it will be clear. If its not I'll think again, reduce Jesse's food intake/stop it altogether and go back the Brighton Hospital for TPN. Fingers crossed that doesn't have to happen. I have lots of funny stories to tell you of Jesse and shirts, medals and ties but I'll save that for another day. The wonderful Tim is visiting again, and he'll be here any minute so I'll sign off now. As I write Jesse is preparing his business plan for his mineral and gemstone business. More details later. As ever thank you so much for your support and love and positive thoughts,
lots of love
Claudia and Jesse
xxxxxxxxxxxxx
PS we can't wait to get home, I've only seen Bernie once in over two weeks. Derek has been doing a wonderful job at home with the help of Lily, Albie and Stan, so I know he is happy, but I miss him and everyone else all so much...