Questions, questions, questions… And the answers?

T+143 : First immunology appointment post transplant

So as those who have been reading know today was the day we officially transferred back to immunology and Dr Waseem. It was also the day that we hoped for some good news about meds, weaning and progress. I know , I know …you are probably reading and thinking why did she build her hopes up, why did she put so much pressure on the appointment. Well I can’t answer your questions but I can tell you the answers that I got for mine…

We arrived in a rainy London in time and headed straight to the hospital in good spirits.
The waiting room in Safari Outpatients was almost empty! This was a complete contrast to to the heaving masses there 4 weeks ago! The bad news was that I overheard the people behind the desk saying that they couldn’t find any of the doctors that were supposed to be there!
We met Hiral from the BBC crew and had a catch up and then the smiley baby Jack with his lovely mum and dad came in too.

Herbie went into be weighed with Joyce, the HCA, and he was very amusing. Joyce is always funny with him and today was no exception. His weight continues to rise (driven by steroids) and he’s also grown in height! His blood pressure was coming in stupidly high with the electric pump but after I reminded her that he needed a manual BP machine for a more accurate result and so she got one and his BP came down to a totally normal rate!

Waseem called us in and finally I got to ask my questions!
He was pleased with how he looked and his previous bloods. He explained that his counts are looking really good and that he is still 100% engrafted. I asked if we could still plan for him to return to school in January and he said definitely, maybe even sooner! This was music to my ears.
We discussed meds. I raised my concerns about the long term use of Amikacin and he agreed and decided we would stop it as of today! Just like that, one iv down! Whoop whoop! I pushed my luck…how about the other one? Would we still need iv’s by Christmas Day ?
Waseem explained that they needed another CT scan to check the lungs and a scan of the liver/spleen to check for fungal lesions. He would arrange for December and if all good he would stop Micafungin before Christmas.
Prednisolone is to be gradually weaned again, MMF weaned from November. Ciclosporin is a little way off yet but that’s fine.
Waseem also explained that they are still investigating our genetics and trying to work out what happened with Lily. Dan had to give more blood for their studies. Whilst we waited there for Dan , Helen, Herbie’s teacher in GOSH, popped by. He was thrilled to see her.
Then we left and headed back to Robin Ward for the first time since we left in July.

It was odd going back there after all of these weeks. We spent almost ten weeks there, calling it home. In the grand scheme of transplant we were one of the lucky ones, some dear friends are still there getting over daily hurdles, some came home without their babies.
Seeing the familiar faces was lovely, David let us in, Maria met us at the door of Robin Ward and then Amy, Lucinda, Maxine, Rose & Rosie appeared. All were full of hugs and smiles and were happy to see us. Maxine got her phone and called Rehka as it was her day off and Herbie chatted merrily to her. It was lovely to see his smiling face light up at seeing them all and hearing Rehka’s voice x

Herb on the phone to Rehka and with Amy.
Herb on the phone to Rehka and with Amy.

So we left London and headed home, knowing we were starting the next plan and returning in four weeks to discover our next move xxx
Remember , remember the 5th of November, gun powder, appointments and what?

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