Day +50 and +51

Writing the title to this blog gives me a shock and probably explains the heavy feeling I have had over the past few days. It is now 50 long days since Jesse had his new marrow and there is no prospect of leaving here in the short term. At ward round yesterday the consultant, Nick Goulden, said that we would be here for quite a time yet, something I have been becoming more and more certain of. I asked him if he meant weeks or months and he wasn't able to answer. The best he could do was to say that it would be weeks but could be longer, and that only time would sort Jesse out. You see the doctors don't have all the answers, many of us on this ward are very aware of this, and it isn't a good feeling. They don't know how to stop Jesse pooing for England, there is no real treatment except waiting for it to go away and of course they don't know how long that will be. The adenovirus is back (on Tuesday they told me he was pretty much negative). I was happy to hear this because I fear GVHD and the damage it does. Adenovirus Jesse can beat himself in time, GVHD he can't. And at least it gives explains why he has been pooing so much again. Recently I have obsessively keeping a record of everything in and out through the day, mainly so I can track how much is coming out of him. On good days I find myself elated, thinking this may be a breakthrough, on bad days my heart sinks every time he says "I need a wee" because it is rare that he only does a wee, and as the totals mount I start to despair. The volumes that Jesse is losing on a daily basis mean that coming home simply isn't an option. He needs so much replacing that he has to be here, every other day he has to have a 4 hour IV drip of albumen (a protein he keeps losing), plus potassium, phosphorus and magnesium, all of which is added to his TPN (his IV nutrition). They also replace his stools loss with fluids IV and through his PEG.

At least the doctors have agreed to allow Jesse to continue eating, they say that they have to consider the psychological effect on his well being and can see how important it is for him to eat. They told me that if he were a baby they would put him on nil by mouth as he wouldn't be able to complain...poor babies. The nurses, however, are supportive of him eating, they have seen that it can turn things around. I think if he wants to eat then he should, at least if his bum dries up then his tum will be used to food. We have had no vomiting since Monday, in itself a massive breakthrough.

I wrote the above this morning and haven't had a chance to finish it...the rest of our day on Friday was OK. We got in a taxi again and went to Buckingham Palace and Westminster Abbey. We got out and looked around the Abbey for a bit and Jesse was a loquacious as before. This time the clock ran to almost £25 again , so I started to get money out, gave the driver £20 and immediately he handed me back £5 and said "Put it in the box for me".

Jesse had three horrible nosebleeds and a platelet transfusion as a result, it was very distressing for both of us and so on Saturday morning he was feeling very low. He had a horrible blood clot in his nose that he couldn't pick and his spirits really sank. Luckily through the day they rose again, Tim visited, we made microwavable popcorn, Derek and Bernie visited and Tim and Jess made headway with our new puzzle (we'll put a photo up when its finished). I fell 100% better for seeing Bernie tonight, what a perfect bundle of humanity he is! He is boisterous, funny and confident, and best of all he remembers who I am! He is coming again tomorrow, I can't wait to see him.

I will write more tomorrow, it is now 3.25am new time and I have to go to the East End to buy white stuff to dye tomorrow. I was up late having a glorious supper with Tim and then chatting with Emma (Liam's Mum) and Caroline (Stefan's Mum)...both of whom are real characters and very funny...when I got back to the room, Jesse was awake saying he was hungry. I said he had to wait till morning as he was having an overnight milk feed, but he pointed out the liquid was clear. That boy is really on the ball, he never misses a trick. It transpired our nurse had put up dioralite instead of milk, so Jesse had missed 8 hours of feeding. She was mortified, I was pissed off, Jesse was vindicated! So he has just had some pitta bread and the milk is on at a higher rate till 10am. I'll tell you about the nose bleed fiasco that happened last night another day...night, night, sleep tight,
love
Claudia
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