“The dogs are off the leash “

T+39

The day didn’t start that well for Herbie and Daddy. Already tired from a restless night , Dan woke to find an oxygen mask next to Herbie’s face and monitors on. Apparently Herb had desaturated in the night and so oxygen wafts were required and monitoring. He woke with a temperature but Dan reported he was quite bright. Not long into the morning though and he was suffering from an upset tummy and was also sick.

I drove to London as usual but gave my mum and dad a lift too. When we arrived Dan explained that Herbie also was covered in a rash and GVHD (Graft vs Host Disease) was the most likely cause.

Herbie was keen to see us all and after the initial hugs etc etc he wanted to open some of his post .

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A card from Libby.
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A brilliant incredibles outfit arrived from Ben, he was thrilled and wanted to wear it all day!
imager hanks S
Thanks to Sam for all of this brilliant loot!

And to Lily and Kitty’s teacher, Rachel Bradfield for the above. He loved the bag and pencil case especially!

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We were happy to see Herbie  looking full of beans but at 3.30 a temperature got the better of him! The ward round happened whilst he was asleep.
Thankfully everything was explained.
They dropped Amikacin because the kidneys were not happy. This meant adding in Rifampicin again as micabacterial cover. They did that but Rifampicin can mess up ciclosporin which helps GVHD. They started higher steroid doses down his Hickman which they said should stop the rash and fevers. He explained that the new  lymphocytes are like young dogs and the ciclosporin is the lead, as the levels dropped they were suddenly unleashed and raging after the micabacteria. This caused high temp, high CRP , rash & inflammation.
Herbie was still having temps when the others left but he’d enjoyed having them visit.image
The evening was fever free but Herbie didn’t want to go to bed after his big power nap. I finally got him in bed around 11.30pm and even then he was still singing!

 

blood results
HB 91
WBC 6.3
Neutrophils 4.96
Lymphocytes 0.46
Platelets 46
CRP >270

Urea 3
Creatinine 39

I head into Day 40 hoping that the steroids do their trick , tame the dogs put them back on the leash and we can finally continue with preparations for our release.

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