T+68 Day 13 since discharge. 1st BMT clinic post transplant.
Typically this morning Herbie chose to have a lie in! When I finally went in and woke him he was not happy and said he wasn’t going to GOSH. I could understand his feelings but had to explain that we had to go.
The journey was good and uneventful despite the heat. We arrived at GOSH in good time and went straight to Safari Outpatients.
We walked in to find Lucy, a fellow BMT mum who had been on Fox and her son also waiting for their appointment. Herbie joined in their table football game until it was time for his weight, height and other obs to be done. His weight was up again since discharge and his BP was also a little high. We took our seats back in the waiting area.
It’s not the first time it’s happened but it still amuses me to see Great Ormond Street flash up on my phone as an incoming call whilst I am actually in the hospital.
It was even more amusing when the nurse on the end said she was calling from Safari outpatients (where I was myself!). Did I realise I had missed Herbie’s 12pm ultra sound? …errr no, I wasn’t actually aware that we had one booked! It seems there had been a little miscommunication. The nurse apologised and said she had rearranged it for 2pm.
Olga called us in. She was pleased with Herbie’s progress and seemed totally calm about the blood in the wee, declaring he needed to use some steroid cream as it looked like a little cut. She was pleased that we had dropped two meds so far. Her aim was to drop the steroid amount by half as of tomorrow. When she sees us in three weeks she will drop the MMF. We asked about the iv’s. The plan is two more months of Amikacin and four more of Micafungin.
We headed to ultrasound. The scan showed the spleen to be as it was last time but the wall of the bladder had thickening suggesting an infection. Olga called me to explain that it was quite a common problem. Sadly, common but painful to witness. The cure is lots of water so his fluid target was increased from 1.5 litres to 3 litres! That means constant drinking I suspect!
The bloods were not taken for ages. This delayed our ciclosporin until 4.30pm. Which meant the evening dose couldn’t be taken until at least 12.30am!
Then there was a problem with Amikacin dosage as it wasn’t standard and didn’t meet ward protocol.
We were filmed by Dolland and Katie for part of an Open University course and finally , at around 6pm, we left for home.
Today has totally wiped me out so I’m off to sleep.
BMT fact of the day
70% of people needing a donor won’t find one in their family.
Thank You Rufus!!!!