Without the rain there would be no rainbow

T+12 started with a fever. Ugh! After the good day yesterday we had been quite hopeful that we would have another good day today but as the night progressed it was clear this wasn’t going away overnight!

The blood transfusion was ready to go as soon as the iv’s were completed but before they could finish he spiked a temperature. At 38.8 I knew we needed to get paracetamol in quick but there were no lumens on the Hickman line available for quite some time so we had to go through the PEG which isn’t as effective. This proved to be true as two hours later when they checked his temperature it was 39.9!!!!
Obviously it was too soon for more paracetamol and ibuprofen doesn’t seem to be an option during transplant. I had to sponge him and put the fan on. He slept throughout. Strangely so did I after a while.

When I woke at 6.45 I was told he had finally got rid of the temperature during the night without needing more paracetamol. I went to give him a kiss and he felt hot. I told the nurse who checked again, he was 40!!!
As soon as a lumin was free on his Hickman line he could have paracetamol.

I went to look at him and he was all red, hot and sweaty and covered in hair that had fallen out over night! It really was stepping up.

He didn’t want to wake up, Holly was back on and looking after us for the third day running which was great. She came in to check his obs. His temperature was still 38.8 an hour and a half after paracetamol which wasn’t great. His body seemed red, his scars on his neck looked redder and almost irritated , as did the one on his arm. Every time he moved slightly more hair got left behind on the pillow. His little face looked sad and it was making me feel the same.

He woke briefly to go to the toilet, he had diarrhoea and was dizzy as he stood up and said his head hurt. I had to weigh him too and he looked very miserable so I quickly changed the hairy sheets and pillow case and put him back to bed. The doctor came in but he really didn’t even open his eyes. She said the Paul Veys had warned that this might happen and that things were in place and if more fevers persisted we had other antibiotic options.
Holly came to do more obs, I noticed the SATS which were always 99 or 100 were 92! I queried with Holly and she moved the probe, then changed it. There was no change and she told me she believed it was accurate and therefore she needed to keep him monitored as if it dropped below 91 he would need oxygen. I was absolutely mortified! How had this happened so quickly?
Thankfully after a short while he started to pick back up until he was sitting at 97 again . Big relief!

He was still warm and sleepy as the morning went on, occasionally opening his eyes, nodding or shaking his head but that was it. Bev arrived excitedly with his post but he didn’t stir so I put it to one side until he was ready for it.
As midday approached he was given iv paracetamol, 15 mins later it was done and his obs showed he was 36.6!!! Hurray!

My mum arrived and I was so pleased to see her! It is lovely to have another face from home in the room. Can’t wait for us to get from these Green precautions to Yellow when all siblings and grandparents can come in too!
Herbie woke briefly to acknowledge mums arrival but then went back to sleep. Mum sat and stroked his head and spoke softly to him as I tidied up the room and heard news from home.

Herbie’s hair continued to fall out and I need to keep it off of his face as it was irritating him. I asked again if he wanted Holly to buzz cut it? Do a Mohican? He was adamant he didn’t want it cut off. The BBC crew arrived to film if Herbie was ok with it, he said he wasn’t!

The consultant ward round was due to take place this afternoon. Herbie began to wake up about an hour before and although he looked pretty grim and kept pulling large clumps of hair out he was awake, cool and relatively happy! He just wanted cuddles with Mimi. A new face always does the trick!

He started to show an interest in his post so we began opening. His interest grew and soon I had a pile of wonderful things and I wasn’t sure who sent what so please forgive any mistakes!
Sarah, Ry, George & Ruby sent this amazing superhero book and a set of Moshi colouring pens. We hope to have a go tomorrow! Thanks lovely peeps x George’s message is being used as our header today too.
Thanks also to Debs, Andi and the kids for the lovely owl card and selection of goodies and to Alison , Dave & their brood for the Moshi mash up cards and cool Mr Potato head card

Finally to my cousin Lorraine & gang for the fab stickers.

Consultant rounds were upon us, Herbie was at this point in a chair as he had been on my mum’s lap having his hair brushed off his face and neck.
Paul Veys said that he thought the whole temperature thing was part of the engraft of the new cells and we joked about Ru’s cells having a party as they rampaged around Herbie’s body. The redness etc was all part of the new cells finding old damaged sites such as scars and trying to mend them. He said it could be an infection but as y nothing had grown so he felt it was more typical and more likely to be engraft! Brilliant news and I also felt much more content knowing this was all par for the course at day 11! It was decided that as he was not keen to eat or drink much he would start overnight milk feeds using the PEG from this evening. Once again I’m so glad we decided to have it done, why I ever worried about my choice in hindsight I’ll never know!

Relieved I called Dan with the update and then mum stayed a bit longer and we bathed Herbs and did the usual morning routine before bed instead.

Bloods were back and for the blood result junkies like myself …

HB 92
WCC 0.11
Neutrophils 0.02
Lymphocytes 0.03
Platelets 23

All as planned, platelets low again but this is expected in transplant as they are one of the last thing to recover so we are likely to get a transfusion tomorrow.

Mum left and Herbie and I settled down for the night. He wanted to get into bed and watch TV.
As Holly letter she took his temperature, 37! Result and we said goodbye and waited to greet our night shift nurse.

I tidied up the room and Herbie finally drifted off in front of the TV, occasionally wriggling because hair was on his face or ears , goodness only knows how patchy it will be by morning.
The night shift began and his temperature was actually low , 35.9 but that’s fine and his SAT’s were good at 99. Relief for a few more hours at least.

I listened as the next door room was stripped and cleaned as another patient had gone home. It’s such an intense clean that happens in these rooms when you leave. They are cleaned for what seems like hours and then swabbed. Nobody can enter once that is done until the results get back.

Now I type this at just gone midnight, slipping into Day T+12. The milk feed is running and the iv’s are almost over for tonight. Hayley, our nurse has just done his obs…
Heart rate 103, SATs 99 and temperature … Drum roll please,
36.8! All perfect! (Over 12 hours since paracetamol too)
Fingers crossed it’s the same at 2am, I’m aiming on some shut eye tonight!
Never forget you need rain and sun to make a rainbow.

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