Illusion and confusion!

T+33 … 6 weeks and 1 day since we started this whole transplant malarkey and this is how it all went…

I woke in the night to the sound of the pump pinging next door but when I woke I also realised that the pump was working in our room too and yet it was 3.15am so it shouldn’t have been on as Herb doesn’t have any iv’s til the morning.
I got up to look but in all honesty I already knew I would find a paracetamol iv up and running indicating a temperature spike, less than 2 hours before we would have been 24 hour fever free.
I went back to bed resigned that what ever was causing this had not “left the building” just yet!

When I woke this morning Herbie was still absolutely out for the count but he was cool. I was able to shower before he even woke. When he did wake he was brighter than yesterday and he sat bolt upright and announced “bath?” This made Hayley(his nurse) and I giggle and then so did he!
I was so heartened by this positive start to the day although after a bath he said he didn’t really fancy breakfast so I knew he wasn’t totally back to himself.

As the morning progressed I learnt that he had indeed spiked at 3am with a temp of 38.2, nothing huge but still a fever. When Hayley took his temperature it was 36.9 and all day it hovered between 36.4 and 37 which was better than the previous two day where we were between 37-37.5. His bloods went a bit strange this morning so they had to redo them which meant no blood results until much later in the day.

The doctor arrived as he was in the loo and when we came out he was hoping to watch Peppa pig but she had turned the TV off! This was not greeted with a calm response and he started yelling at her and telling her he hated her, I was so embarrassed. She said his reaction was because he felt ill! Uh…I doubt it! Anyway as he spiked again she said he would be having an X-ray of his chest and ultrasound of his tummy again (third one in four weeks) to try to work out what was going on.

We decided to have a crafty type day, starting with a deco patch dinosaur which we loved doing.
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Followed by some loom band making and then Amy ,the Play worker, took the Hama Bead creations away to iron as well!
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Lunch arrived and because it would be the first thing he had eaten I jazzed it up…

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This is did the trick and it was all eaten.

Helen came this afternoon instead of this morning as it was sports day . Herbie would be competing in games and winning points for his team, Americas, apparently.
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The activities included blow football, pin the tail on the donkey, roll the balls in the cups and tiddlywinks!
When I returned half an hour later Herbie announced he had done really well and was awarded a medal!
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We had a lovely afternoon together making things, watching. TV , looking at books etc. I nipped out for a cup of tea and started chatting to Juliet (also being filmed for the GOSH series ) and she told me that she will be going home with Sebastian on Friday. Almost 8 weeks for them by then I think.
The door opened to the kitchen and in walked Vicki, the mum of little Jack whose GOSH BMT journey I had followed on Facebook since before Christmas. So funny as I had messaged her asking how her Jack was only a few hours before!
After catching up I returned to Herbie who was bright as a button. Hayley was in with him and she had the blood results but she told me before showing me that his CRP was through the roof at 270! I admit I was stunned as he had seemed like he had turned a corner today and I was also deflated. I felt like either his whole manner today was an illusion, some cruel trick or it must be wrong? I felt really confused!
I was waiting from then on for a sign that I was wrong to think he wasn’t going to spike again.

Herb continued in great form and was excited when the post arrived late! Thank you to Rachel and her lovely boys for the Lego mixel, which we had to do immediately and for my lovely Costa card and just your kind words xxx another big thank you to the adorable Hope whose letters arrive each week with wonderful pictures and tales of her week. Herbie says “he has seen Nanny McPhee before and he knows what you mean! He also loved hearing about the teddy parachute!image

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Whilst I am handing about thank you’ so must apologise to our dear friend Tracy and her family and friends out there in Canada who held a superhero week in honour of Herbie and Rufus raising an astonishing $2985 CND which she tells me converts to around £1600. We are just humbled by your thoughtful and generosity.

Thank you to Tracy and all involved in Canada
Thank you to Tracy and all involved in Canada

I also was excited to hear tonight from Dan that Rufus received this in the post from the band James, thank you Jude for chatting to them, Rufus was thrilled and went to bed listening to the CD.imageimage
And to top it off a friend of Dan’s involved in scouting has nominated Rufus for a special scouting award for helping his brother! Honestly people are being just so amazing x

Handover of the nurses came and Hayley came in to see us to say goodnight. She was now on leave for two weeks and said she very much hoped that on her return we would no longer be here. We said tentative goodbyes and promised that if she returned and were discharged we would pop and see her next time we were at Safari Daycare.

Herbie stayed up chatting, dishing out stickers and loom bands to nurses and generally being cheeky until about 10.45pm! Last temperature before I went to bed was 36.6, perfect. It’s now just shy of 22 hours since he last spiked. I’m on tenterhooks wondering if we can go 24 hours and then hopefully 48 afebrile? Like a cliff hanger I afraid you will have to ‘tune in tomorrow ‘ to find out!
Night all..T+34 please be good to us x

2 thoughts on “Illusion and confusion!”

  1. Fingers crossed that temperature stays on the good side. I am very impressed with his Hama bead creation! That must have taken a lot of patience.

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