Week 16

Monday +102 (January 7th)
Rob is wending his way back to Holt as I write this and I am holding the fort here, although I so wish that we were with him. William is still doing well, they are dropping the TPN to 16 hours a day which is progress and his milk is up to 21mls an hour for 20 hours. He is not drinking very much and is putting on some weight so the reduced TPN and a lower fluid target will help that. His neutrophils are back under 1 again, hopefully they will settle a bit higher in time. The new student nurses have been annoying me today (with their giggling, inexperience and lack of common sense, I know they have to start somewhere but must it be with William!? At least they don’t get to handle any drugs!!) Otherwise we’re doing OK (I think!).

Tuesday +103
A lovely day with Grandma and William. A lovely walk in the park and a visit to the sheep. Rounds came and went, we are still in ‘wait and see’ land. Unfortunately William was sick at 10pm and brought up his NG tube. That was replaced relatively untraumatically and peace restored once more. TPN down to 12 hours so more line free time.

Wednesday +104
William was sick again at 6am but (touch wood) not since. This time the NG tube stayed down, phew! Granma Curtis joined us this afternoon and we had a lovely time playing and seeing the animals. William has needed IV fluids today to replace losses and help his kidneys which are struggling a bit. This will undoubtedly make him even puffier/heavier but this is the lesser of two evils. They have consulted the renal team and William is having an ultrasound on his kidneys tomorrow just to check them out. They think that it is probably the Cyclosporin (the immunosuppressant) that is causing the issues as it effect different people differently so they are going to start reducing the levels. They would reduce the levels soonish anyway as we are so far from the transplant date. We will have to be on the lookout for GVH as the levels reduce so time will tell (as it usually does!). Rob is joining me later (hoorah) we have a meeting with the ‘team’ tomorrow which is a new thing that they are introducing for their most loyal customers! Will tell you all about it tomorrow…. Grandma will also be with us tomorrow, so a full house and a chance for Mum and I to escape for a nice lunch together. Ooh news flash have just seen trailer for ER on More 4 so not long until it will be on ‘real’ TV (cos I really need more hospital drama!!! If only the docs here were that dishy!)
Happy Birthday B!!!

Thursday +105
Well we didn’t get off to a great start with Mum’s arrival delayed by a cancelled train but we went off to the meeting leaving William in the capable (!?) hands of a student nurse (knowing that mum was only minutes away!!) and he was fine and not crying when she arrived! The meeting was with the consultant Cathy, our doctor at the moment Zoe, our going home nurse Rachel (Clinical Nurse Specialist who is fab!), our favourite Robin nurse Hayley and the physical therapist Annabel. It was a very constructive meeting, Cathy summarised where we are now and Zoe nodded a lot. We talked of William’s progress and kind of jokingly said that we would like to have William home for his Birthday but it looks likely that it will take a lot longer than we had hoped/thought of late. We talked about the support we have received or not as the case may be and are now getting more frequent play assistant visits. We are also getting a poster to go on the door with William’s schedule on it and our names as we know the nurses names (generally without looking at their badges!) and they still call us Mum and Dad!?!?!? Apparently they found our feedback very useful and probably got more from the meeting than we did. Lets hope we see a bit more of Rachel soon!!!!
Mum and I scooted off for lunch (which was lovely particularly the Tiramisu!) and a tipple or two. Meanwhile Rob was summoned to Ultrasound for a peak at W’s kidneys which are fine to look at. We had a nice afternoon and another trip to see the sheep and lots of slides on the slide despite the rain. Rob headed off, Mum and I had dinner after William finally went to sleep and I tried (rather unsuccessfully for an early night) and Mum went to her lovely Sick Children’s Trust accommodation.

Friday +106
What a busy day. They are a bit concerned about his increasing weight and high levels of certain stuff in his kidneys so more investigations are being lined up. I was in the shower when the Doctor arrived so hastily dressed for our morning consultation. I was having my first cup of tea when we were summoned to x ray for a chest x ray. On our return the play assistant, Becky came bearing bubbles and stickers which went down a storm. After a sleep and lunch for the ‘grown ups’ we went down for another ECHO (ultrasound on his heart). William was very, very good and lay very still. We saw the other end of his Hickman line on the screen right in his heart!?!?!?!? They saw some fluid on his chest but the heart stuff seems fine. They have given him some oral diuretics to help shift the excess fluid/weight but are monitoring him at the moment and will see how he goes. His heart rate is quite high. Mum headed off and William and I went for a little wander in Russell Square. Rob came nice and early and William went to sleep eventually.