Rashes, goodbyes and more park life.


I awoke to find a small rashy boy in my bed and he was attached to an iv too but he had still managed to get himself over to me.  Just for a while, with my eyes closed, I could pretend that it was a Sunday morning at home as I snuggled up to him and breathed in the gorgeous smell of Herbie. If you are a parent you will know what I mean. The strange thing is that Herbie smells different! He uses creams, bath oil and various other things that just give him a distinct GOSH smell!

We got up late, it was nice. A bath for Herbie and shower for me and then lots of debating about breakfast. We really are struggling with options for him right now. Holly was our nurse and she tried to help with the breakfast choices but to no avail. I gave in…barbecue beef hula hoops it was after all.

The rash looked worse and I began to worry about what they would do to stop it. image

Holly said that it was fine for Herbie to go out again today so he was happy and she even let him run about the ward for a bit.
I ventured to the parent kitchen and met a couple of mums from the other ward that I have become friendly with. Two of them were leaving today. I was so happy for them but obviously wished we were heading home too. We said goodbye and promised to keep in touch.

Helen came and so I headed to Costa so that I could get an early lunch and on my return found Herbie busy doing number bonds to 10.
Hospital school has once again been brilliant.

Olga, the doctor arrived. She explained the plan to sort out the rash. Steroids, for the weekend only , will double in dose to try to sort rash and stop it worsening. The iv antibiotic , Vancomycin ( known as “The Van with mice in”) was stopped , great news as it meant no finger prick today. Aciclovir could be restarted, orally, and hopefully a couple more will go on Monday.

We had planned to SKYPE Herbie’s class but something didn’t work out
At 2pm , one of the GOSH volunteers, Julia, came to play with the Moshi collection.
When I returned I got an ice lolly and we shared them.

Post was exciting today! Thank you to Floss for the news and Freddo. Jo and Abi, thanks, he loved  the letter and card. A card and a Mixel from Rachel, Archie and Sid (And mags for me). Another instalment from Hope and gifts from Archie and Lyndsey. Even a voucher for tea at The Randolph! Thank you to you all, you are great.

Daddy returned from home and it was time for another trip out.




When we returned it was time for me to head back to North Lye. I’ll miss my boys this weekend.


HB 84
WCC 3.22
Neutrophils 2.53
Lymphocytes 0.38
Platelets (drum roll please) 59! He’s still making ’em!
CRP 73
Urea 3.4
Creatinine 26

Sleep tight all and fingers crossed that the rash starts improving.

2 thoughts on “Rashes, goodbyes and more park life.”

  1. Wow! You guys continue to amaze me. Lovely to see Herbie playing in the park my boys are so familiar with, we always have a play there before our annual GOSH appointment. My Tom has been in hospital for nearly a week now ( he has been lucky up to now and hasn’t needed to be admitted for a while). But it brought it home to us again how very vulnerable our children with PID are and our thoughts have turned to you guys, and I think of you when I need that inner strength to just keep going when the family are split up and feeling torn between home and hospital. I really hope it won’t be long until you guys are home and back together as a family. More cwtches. X Kate

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