Enough blue sky to make a sailor a pair of trousers.

T+9… I woke to find myself still on the up and down horses. Sigh. It appears that wishful thinking doesn’t work. I asked Vivi, our nurse over night, how he had been, it was 6am. He’d spiked with temperatures twice during the night, 2am and at 6am and was being given paracetamol by iv when I asked.
I was so tired from sleeping with one eye open and yet I hadn’t actually taken any info on board from being awake. Lesson learned.

I was woken by Dan entering the room around 7.30am. I still felt tired and Dan told me to sleep but I dozed for a short time before getting up. Herbie looked pretty rubbish and he complained about his throat and despite wanting to go to the toilet he couldn’t get up. He was quite a sorry sight. We had Holly and student nurse Kelsey today. They did a set of obs and Herbie still had a temperature, despite paracetamol less than 3 hours before. It all felt too familiar, memories of last November came flooding back and I admit I probably felt at my lowest ebb since arriving here almost 3 weeks ago. He wasn’t able to follow our daily routine for the first time in 19 days, he was too unwell for breakfast, a bath , moisturiser etc. I managed to get a weight but he literally wanted to be lifted onto the seat.
The morning passed slowly. We had to wait over an hour before he was allowed more paracetamol and he got hotter and more unhappy. His throat hurt and he had a few ulcers in his mouth. This is a condition caused by the chemotherapy known as mucositis.
We watched the blue sky and white fluffy clouds out of the window. A lovely Sunday on a bank holiday weekend outside but inside a grey cloud was stuck over our head threatening a down pour.
The paracetamol didn’t work straight away, when obs were taken 30 mins later he was still too warm, his heart rate way too high (SATS thankfully still 100%) and his BP a little too low. This meant his CEWS score was hitting 3 which is not good. A CEWS score alerts the nurse in charge/registrar to a child with potential problems. 0 is what you want!
Herbie’s lunch arrived and you could tell he wanted it. He tried so hard to eat a chip but his throat was too sore. He drank 20mls of apple juice in 4 hours! This meant he needed more water via his PEG.
We were also given gel sachets to mix and sponge inside his mouth to help with the pain.

As the afternoon wore on he improved. The doctor started another new antibiotic. vancomycin. This was another iv antibiotic. When the doctor visited he said it could be an infection in the throat or possibly his old micabacterial infection flaring due to the low cell counts.

Blood results were a bit different today…
HB 81 so literally 1 away from transfusion
WCC 0.25
Neutrophils 0.20
Lymphocytes 0.03
Platelets 16 under the transfusion threshold
So we knew that a platelet transfusion would take place this afternoon. We also get a list of other blood results that I don’t bore you with daily but today his magnesium was low so he also needed a quick magnesium iv as well!
Thankfully his Ciclosporin levels were high again so they suspended his evening and tomorrow mornings iv until a new level is taken tomorrow.
Neutrophils are finally heading nearer to zero. Holly estimates they will be zero by Tuesday, Day 11.

Herbie continued to pick up, although he was still not drinking. He ate half an ice lolly which was soothing and one chocolate button but he really wasn’t able to eat much. He tried an egg sandwich but was still not enthusiastic.

We managed a bath and another mouth care (under protest)
But it was too late to get dressed making Day t+9 also Herbie’s first day he stayed in Pj’s all day since arriving.

The platelet transfusion happened and as the day shift said goodbye his temperature , which had behaved since this morning, began to get a little warmer. I felt sad again, I had so hoped we had turned a corner.
We went for dinner in the parent room. We chatted to our neighbour in the room opposite, Elsa. She is from the south of France and has been here for weeks with her baby who is only 6 months old. They are not having transplant, just immunology issues. She was excited to be going back to a hospital in Paris tomorrow. Three patients have left Robin since we arrived.

Vivi was back on night shift, she did the obs and we were scared of what his temperature would be. Jubilation to learn his temperature was 37.5… Not over 38 and no paracetamol for over 9 hours! Yippee! Perhaps the day was coming to a promising close?

So tomorrow brings two things…
A) double figures at T+10
B) time to temporarily say goodbye to Dan as he heads home for a few days.

Tonight I am left with a childhood saying in my head,
“There’s enough blue to make a sailor a pair of trousers”
It’s optimistic … I think this evening I too have seen that bit of blue sky in our grey cloudy room. Hopefully tomorrow may bring some glorious blue skies …

2 thoughts on “Enough blue sky to make a sailor a pair of trousers.”

  1. Undoubtedly Herbie and Ru are superheroes. But so are you, Dan and the rest of your family: all of you brave, doing all you possibly can and being extraordinarily positive under very difficult circumstances. Please include yourselves in the “superheroes” category – and very best wishes to you all.

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