I was woken by the sound of my phone announcing a text from Dan this morning at 6.15. It was with hesitation that I read it…what was he messaging so early to tell me? It could be good news, the rash was better, things were improving? Or maybe that things were worse? I decided I had to just face it so I opened it. It was thankfully not about Herbie himself, it was about alarms on pumps going of and Dan bit being able to sleep despite being exhausted due to the noise.
Kitty had woken with a high temperature in the night and continued to have one this morning so I quickly sorted out her staying home and as soon as the other two were safely dropped to school I headed back to Great Ormond Street. The journey was an easy one in terms of traffic and I made excellent time but all the way there I was plagued by thoughts of how Herbie would be today and worries about how long this whole episode would take to resolve.
I called Dan as I arrived in Judd Street as usual and he gave nothing away in his voice but when he said Herbie was with Helen the teacher I knew he couldn’t be as bad as I had anticipated. Dan and I met in the Lagoon and he filled me in telling me that they had slept in after the initial early start, dreaded NPA and finger prick. On waking they had a bath, and applied the stronger cream to the rash that was a little itchy. Dan felt it was improving though although he told me to brace myself as still looks pretty awful.
I’m glad he warned me as it would have been a bit of a shock! He really was very rashy. Helen left saying that as of tomorrow Herbie would have a new teacher, Jess, as she had an ex pupil back who was demanding he had her. Herbie will be sad to say goodbye to her I’m sure. He was on great form and I was so happy to see him behaving normally despite the rash.
We didn’t get out today but thankfully he didn’t notice. He had a lovely FaceTime with Lily and Sam when they finished school. It really does lift his spirits and they are the only two he will happily FaceTime as he moans usually that people are interrupting his games/programmes!
He had a lovely book from Cherry Class in his school, full of Superhero stories that they had written and illustrated. The most exciting thing was the new superhero outfit that they sent for Dog dog! Herbie was thrilled (and I did notice Dog Dog looking a bit smug too behind the mask!)
There was also some fab Moshi clay buddies and Moshi squishys that were sent by Jo and the gang.
We were a little miffed to learn that the doctor had been whilst the teacher was in with Herbie so we had missed her as we had questions! Especially when the blood results came in!
HB 92 (brilliant, almost back in normal range without transfusions)
Platelets 136! ( go platelet making boy)
CRP 13 (yeehah )
The neutrophils are still rising as we were told they would with this extra steroid but I was concerned that the lymphocytes that they are trying to harness are also going up. Apparently the doctor was happy with the bloods.
Dan was thinking about heading back when Herbie’s skin started looking redder and he became very upset and agitated and said he was itchy all over. Piriton was given but there was no change, the stronger cream soothed it temporarily but soon he was violently scratching again. It was all a bit upsetting. Finally just after Dan left the hospital Herb was given the stronger Piritonesque iv that also aids sleep.
He fell asleep, but on my bed but the rash continued to look fiery and he was itching in his sleep.
He didn’t sleep for long, waking upset and itchy and demanding a dressing change. Ella, his nurse again tonight, obliged but couldn’t give anything more for the itching.
Finally he calmed down and I watched lots of the redness fade. He started running around the room! He ate a packet of crisps and then iced gems and drank another 280ml of drink! (Fluid target exceeded then! ) finally he sang along, whilst wearing headphones, to Moshi songs and was happy as anything!
He’s still sitting here as I type, with trusty Dog Dog (The Dog wonder) by his side.
Ella was saying how Herbie sailed through the first 6 weeks making transplant look quite easy. How they all expected him to be gone a few weeks back and then this little blip has gone on, just need to turn the corner and it’s home.
I’m still waiting to find that corner so that I can turn it! Maybe tomorrow, keep plodding onwards…