Call me , call me …


When you leave the safety net of Great Ormond Street Hospital and the experienced nursing and consultant team it is difficult when you question yourself and can’t just nip out to the nurses station to get a definitive answer. Before leaving there is a ‘discharge talk ‘ but there is so much to take on board that suddenly you find yourself trying to recall conversations, thumbing through the shared care folder and generally mistrusting your memory!

This morning was our first real taste of this, just 4 days after leaving GOS. Herbie woke complaining that he felt itchy. We looked at his skin, it looked a little blotchy. Was it his GVHD rearing it’s ugly head? Was it something viral? What should we do?
We decided that it might be the GVHD, we applied his Tacrolimus cream in the hope of catching it before it got worse. He was fine other than this. The folder says ring if there is a rash, the drug chart said to use Tacrolimus as and when needed , so did we need to ring?

We decided that we would see how it progressed over the next few hours.
Herbie was a drinking and eating machine this morning. By 11am he had already consumed 750mls of his 1500mls and munched his way through crumpets, carrot sticks, dairy lea dunkers, more carrot sticks, and then he requested lunch!

When Dan’s mum called about booking the chimney sweep as we always do for August, I was transported back to the discharge talk. What had they said, I suddenly remembered they were going to check and get back to us but I don’t think anyone did. There was also the question about dogs and the rash…it was time to put in a call to the BMT nurse specialists. I left my queries on the answering machine and awaited a return call.

Lunch was eaten but as it did yesterday it kind of rolled on into a snack and the snack went on until dinner time. The fluid target was reached by 3pm with a selection of drinks including two cups of hot chocolate on what was probably one of the warmest days thus year!!
He had a very stationary day today choosing the ipad and TV over games and being outdoors.

Community nurse Laura arrived, there were more blood samples to be taken before the Amikacin and Micafungin iv’s commenced. There were no results back yet from yesterday’s bloods…that’s now 4 days since we have known what was going on inside. It’s a bit odd after 9+ weeks of knowing the blood results each day.

The phone call from the BMT nurse, my mums arrival and school pick up all came at the same time. I sent my mum packing to the school playground and chatted to the nurse on the phone.
After careful discussion we had answers…
1) no chimney sweep for 6 months!
2) rash probably caused by going back to old body wash
3)no contact with dogs, regardless of inoculation.

Honestly there are so many rules.

I had another community moment today, thanks to Justin, I know your other half Sarah reads the blog so she will pass on my thanks. The little acts of kindness are the ones that always make me cry.

With fluid intake targets exceeded and a full tummy Herbie went to bed ready to do it all again tomorrow.
One more week until we head back to GOS for our first BMT outpatients appointment.


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