T+46 : 8 weeks
I woke to find that once again I had a small person sleeping next to me. I checked the time…3am. I woke again at 5am, he was still there and he stayed there until we woke up officially some time later. He asked me to run a bath so I dutifully obliged but when I popped my head out of the door to tell him the bath was ready I found him asleep in his own bed!
He did finally wake up for his bath. The rash was still very much in evidence all over his body but I was convinced it was improving. His nurse,Sufi, agreed.he certainly was bright and chirpy and I didn’t see him scratching at all.
The morning seemed very long as we no longer have Helen at 11.30am. Herbie asked a couple of times when she would be coming and seemed sad when I said she wasn’t. We watched Cloudy with a chance of meatballs 2 again on his ipad and played some Moshling Rescue. When his dinner arrived I was amazed at the speed with which he ate it , plate was cleared , maybe the steroids were effecting his appetite now.
The new teacher was due at 1.30pm. Just before she came Sufi , his nurse arrived with two swabs to do nose and throat swabs for the start of the new month. This went down like a lead balloon and a little steroid rage! When the new teacher, Jess, arrived she was greeted by a very very cross Herbie.
Thankfully her arrival was a complete distraction and the swabs were soon a distant memory.
Herbie loved his new teacher and I left briefly for the supermarket as Earl Grey tea bag stash was worryingly low!
On my return the film crew arrived to film the consultant ward round. Dr Chiesa is ending his month as consultant in charge and had agreed to be filmed despite being quite camera shy.
He looked a little surprised by the severity of the rash and we talked about its management etc. He said that he wanted to see it again tomorrow to ensure it was improving. The registrar that he came with saw Herbie yesterday and agreed with me that it was better. I asked again, for confirmation, about the rising neutrophils and lymphocyte levels and he assured me it was due to the steroid and not to worry about. He anticipated another 7-10 days here and I can live with that. Herbie said later, “at least I will see Rehka and Hayley and maybe Amy again” (3 of his favourite nurses). Herbie did give the doctor the run around but eventually we managed to get him up on the bed to be examined!
HB 96 ( exactly the same as it was on admission)
Platelets 161 (back in normal range)
After his last iv’s of the day we got ready to head to the park. Herbie was so excited I thought he would burst and he ran the whole way. He had 15 mins play before he announced he felt ill and we came back. He literally undressed and went to bed!
Herbie did wake and was a little itchy despite the creams etc but then after an episode of Skatoony, he went back to his bed and is currently fast asleep!
So today is the first day of July, we came to transplant on May 6th, it’s odd to think that my baby hasn’t been at home all that time. I can’t wait to get him there. I think, if I squint , I can see that corner up there somewhere in the distance .