Blaming the steroids

T+48

I was awoken by a small boy pulling back the curtain around my bed and roaring! Arghhhhhhh! Frightened the life out of me for just a moment but filled my heart with joy seconds later when I realised he was awake with a smile and some spark. The usual demands of bath were heard and so we got cracking.

The GVHD rash was retreating even more, leaving me with a very dry, flaky skinned boy despite the oil in the bath and daily moisturising regime. However I would rather that than the GVHD!

Herbie was in a chirpy mood and I was hopeful for a good day. Amy arrived at 11am to spend time with Herbie and she had a new GOSH volunteer, Helen, tagging along to meet the patients. I ran off to Waitrose for more snacks for Steroid Boy Wonder!

When I returned he was having a great time but as soon as they left he started demanding his dinner. It usually arrives at 12.20pm but by 12.45pm it was still nowhere to be seen and he was getting quite angry! The doctor popped by at this point and she received lots of scowls and raspberry blowing. She told me that they had decided not to up the steroid and it was a good call as the rash so much better. I asked about the bloods and she said they were all good as were kidneys and liver. Thankfully Emily, one of the housekeepers, arrived with lunch shortly afterwards saying the trolley had been late coming up. He ate well but started demanding crisps again. I went off to get a cup of tea from the ward kitchen to escape the rage but when I returned one of the vicars from the GOSH church had popped in to say hi! I found her face to face with my steroid raged 5 year old …comedy scenario ensued but thankfully when I bumped into her later at the lift she couldn’t praise my patience enough 😉 … Phew!

Jess arrived for more lessons and I was greeted by a very happy boy on my return. Feeling happy I nipped to get the blood results…they were mixed …
HB 95
WCC 14.27
Neutrophils 11.67
Lymphocytes 1.33
Platelets 192

Urea up again although creatinine still fine. Liver results looking a little high too but doctor had been in and told me all was fine. It’s hard not to worry though.

The afternoon passed by slowly but we played games and had a giggle.

Playing games
Playing games

Amanda, our nurse today, put the Amikacin & Micafungin up early so that we were able to head to the park a little early.
Herbie did his usual banter with the nurses, Lucinda telling him the park was gone now made him run after her up the corridor!
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We headed out , pausing to have a quick look at the TV in reception
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but sadly the warm weather and beautiful evening meant the park was filled with children which meant we couldn’t go in. We headed back to Queens Square and took out our pot of bubbles and the fun began.
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Once again he completely over did it and we had to come back and he cried on his bed that his tummy hurt…ten minutes later he was fast asleep.

Hayley was our nurse again tonight and he was sleeping when her shift started. However, at 9pm his Skatooney sensors must have started beeping because he woke up ready to watch. He was ravenous again but thankfully after 200mls of drink, 3 yogurts , crisps and half a muffin he climbed into his bed and fell asleep.

Before he drifted off he said “I’m thinking about being home, I will ask Dr Olga tomorrow…I bet she”ll say “you are eating and drinking well so get outta here”

I wish she would x

2 thoughts on “Blaming the steroids”

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