Day +48 and +49

Photos of the Day



Thanks Dymphna for these brilliant photos, Jesse thought they were both hysterical. Cory and his cousin celebrating St Patrick's Day and Niamh and her cousin in the jacuzzi!













Sorry I missed a post yesterday, Jesse really needs one to one full on attention all the time he is awake (7am to 8pm) and so if I have a visitor in the evening it is difficult to find time. Yesterday was a good day, nearly half the amount of poo from the day before. It is amazing how pooing just under a litre can make so many people so happy! Jesse had a great lesson, he giggled his way through it. He had enjoyed his 7 chips for lunch and tolerated a milk feed through his peg all night (only at 7ml per hour, but that is a lot for him). We went for a walk round the block in the afternoon and kept going with J & V's impossible puzzle! In the evening Red Ruth came to visit and we got quietly tipsy in the parents' interview room, it was really good to see her. Our night was relatively peaceful.

Jesse was awake and thinking about breakfast well before 7am. He started the day on good form but had a couple of funny moments, later he told me he had had some quiet mild stomach pains. He also did a lot of poo, in 12 hours he did almost as much as he did in 24 yesterday. Of course I then start worrying, or maybe I should say, panicking that it is GVHD again and that we will be here forever...Because the volumes keep changing (and he is on antibiotics so they muddy the water...no pun intended) the doctors don't seem too worried. The dietitian says Jesse can have liquid aminos on his wheat free pasta (like soy sauce but nicer), white bread, popcorn and even dough balls on Monday! Of course Jesse was thrilled. He has just woken and is so excited at the prospect of a little bit of salt on his chips tomorrow, which she also OKed.

Derek was able to pop in for a bit before his lesson as he was working in London for the day, I know he was pleased to see a real improvement in Jesse. I really hope Bernie is well enough so they can visit on Sunday. I miss that (not so) little baby so much. By the way Helen, thank you for the photo, it was lovely to see Bernie eating with a spoon!

This afternoon we had a line free couple of hours but it was cold and overcast and there was nowhere to go, so we decided to jump in a taxi and go for a ride. We were lucky; our taxi driver was great. I suggested Hyde park or the river, he thought the river would be better traffic wise. Jesse sat in the fold down seat so he could see out better and our driver took us on an inspired route! We went over Waterloo Bridge, past the London Eye, back over Westminster Bridge and past the Houses of Parliament and Big Ben, then round St James's Park, past Buckingham Palace, then back to Westminster Abbey, past Downing Street and round Trafalgar Square and back via Bush House to GOSH. It only took 40mins and on the clock we were nearly up to £25 but when we got out the driver said he would accept no more than £15, he was very insistent so I had to give in! The moment Jesse saw the Houses of Parliament, he remembered that he had lived there in a past life, as he had in three houses we saw in and around St James's Palace, and in Westminster Abbey. It was wonderful as I haven't heard that kind of Jesse talk since we came in here. He said he had organized all the gold on Westminster Abbey and on the lamp posts, and every military statue we saw was of him in one of his past lives. He had been King of America and England many times and told me all about his crown, made of silver and gold and covered in diamonds. He even told me that Nelson had been one of his friends but he had never been a Lord, and he had known him up to the day he died. He didn't stop talking once, it was such a treat after all this time!

I must go as it is nearly 1am and I am very tired. I had been feeling very low this evening thinking that we will never get out of here (there is a little girl the same age as Jesse, now on Robin ward, who has been in for 6 months post transplant, I think with very similar problems). Having written about our day though, I feel much more positive as there clearly are improvements and Jesse is as the doctors keep saying "clinically very well". Jesse and I were talking about it yesterday and he said to me "You know Mum, it is really like a battle". I agreed with him and we decided that it was a long and hard battle, but that we had won lots of it aready; he had had a successful BMT, almost beaten GVHD of his skin, fought the vomiting, defeated adenovirus and now we just had sort his bottom out. To his great amusement I suggested it was the battle for Jesse's bum that we needed to win, henceforth to be known as "The Battle of the Bum!" And on that note I have to share our other excitement of the day...we have got a commode! It doesn't sound like much but to us it means a lot. As you may have gathered everything that goes in or comes out of Jesse needs to be measured. So he has to sit on a bedpan on the floor but as Jesse's legs are very weak I have take his weight from under his arms and lower him. Over the past few days my knees have become quite painful and I am terrified of dropping him, especially in the night if I am sleepy, also crouching on the floor is undignified and uncomfortable for him. It only transpired we could have one when I commented to our nurse, Lucy, that it would be good if such a thing existed! And hey presto-it did! Just like the cord with a button on it so that Jesse can call a nurse if he needs to without getting out of bed!

Anyway, enough of this rambling. Thank you for the comments, jokes (esp Charlotte) and the alliteration (Jesse thought it was funny at first, but got annoyed with me when I kept doing it!)

Love
C
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