An itch that just won’t go.


Another distance blog today and one that I don’t relish writing. It’s not been a settled day in Room 2 of Robin Ward and the fact that I haven’t been there to support my boys makes it even harder to write about.

Dan phoned this morning to say that it was an unsettled night as the itching of the rash had become become pretty unbearable for our poor Small. Piriton was having no effect and the cream that started off being quite soothing wasn’t helping much (plus you can only use it twice a day). I chatted to Herbie who seemed quite chirpy so I hoped that the day might improve.
Dan thought the rash was no better, maybe even a little worse which was definitely NOT what I had hoped to hear. I had been clinging to the hope that by Monday it would be improving but with less than 24 hours to go I was feeling pretty skeptical.

Dan called later to say the doctor had been in and agreed the rash was worse. She reported that bloods were good though and she hoped that the rash would start to show signs of improvement when the ciclosporin levels went back up. CRP was in the 20’s so had come down. I was waiting to actually see these bloods as was Dan.

I received a FaceTime call from Herbie at lunchtime and he was MAD! He demanded I came back to the hospital now and that Daddy went away because he was mean to him. It turned out that Dan had told him to eat his dinner and he wanted to play his ipad. Maybe a little steroid rage?
Thankfully he calmed down but I noticed his rash was worse and that he kept itching.

The bloods came in and Dan called to tell me them as he knew I would be upset about a couple.

HB 88 (really holding it’s own now and climbing)
WCC 9.91 (another big jump worryingly)
Neutrophils 8.16 (very very high 😦 )
Lymphocytes 0.40
Platelets 112 (back in 3 figures all by themselves !)

CRP in the 20’s apparently but wasn’t written up.

Urea 4.4
Creatinine 28

The neutrophils were a worry, they had shot up and so in turn had the overall count obviously. Dan and I decided we needed an explanation as we were both beside ourselves with worry so he asked the nurse to talk to the doctor.
Thankfully she came to talk to him rather quickly. She explained that the steroids would make the neutrophils rise like that and wasn’t a concern. Panic over, briefly.

The boys did manage a trip to the park to try to keep his mind off of the itching.

Apparently he ate really well today, marmite toast for breakfast, jacket potato and beans for lunch and toad in the hole for dinner. Dan however didn’t really have such a balanced meal.

As bedtime got nearer I was to learn that the itching was quite unbearable and he was given a push in the Hickman line to help ease the itching and aid sleep. They also prescribed a different and stronger cream.

This feels like a particularly bad day and I’m sad about Herbie being uncomfortable. I hope that finally tomorrow things calm down.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s