And breathe…

T+1 … Yes I can’t quite believe I am writing it but today was T+1, our first day post transplant and…not much happened! It really was such an exhausting day physically , mentally & emotionally yesterday that today was just about doing nothing. I guess it’s a bit like the days after Christmas when you realise everything you were building up for, that one big day , is now history.

I woke later and so did Herbie. He was stroking his throat and my first thoughts were that chemo side effects were starting. The nurses have warned us that he may well go downhill a little, usually between T+7 and T+12, so we need to be prepared. I asked him what was wrong. “Nothing mummy” he said “it’s just I think I can feel my new immune system starting to grow”.
Herbie spent most of the day hooked up to iv pumps. He now has the following iv’s each day.
Cyclosporin twice a day for an hour each time
MMF three times a day,1 hour each time
Ambisome once a day for 2 hours
Amikacin once a day for 1 hour
Acyclovir three times a day for an hour
This totals 11 hours but each iv also is followed by a flush which is usually a minimum of 10 minutes each time so a minimum total of 12 hours +
Today he also needed his immunoglobulin replacement therapy. Whilst in GOSH he will have his via his Hickman line as opposed to the subcutaneous injections in the thighs using the mini pumps that we use at home. That also took 2 hours plus. Thankfully Herbie has a double Hickman Line so some medicines run at the same time but he still spent the majority of the time connected to machines. He did moan a little to Maxine, the nurse in charge today and she told his nurse Lisa who put one iv back a little to give him 45 minutes off this afternoon.
We don’t get post on a Saturday as the post room is closed so Herbie was a bit sad that he didn’t get anything so in future I may keep things back on Friday for the weekend. However we did have a visitor! Herbie’s immunology nurse from the Jr in Oxford, Nicola, was coming to London for a reunion and asked if she could pop by. It was great to see her and the ward sister even allowed her onto the ward to say hi to Herbie through the intercom.

Blood results were in today
HB 101
WCC 2.03
Neutrophils 1.94
Lymphocytes 0.04
Platelets 294

All still ok, although I noticed platelets had taken a sudden dip. Apparently we are to expect a few of the numbers to rise but then dip again. I think I will start getting obsessed about them soon!

So a pretty uneventful day, a bit of colouring, lots of TV/ipad action. Football for Dan on the TV & a trip to Waitrose for me!
So I will cut it short today, I just wanted to add something before I sign off.
When I went into Waitrose and the Brunswick Square shopping centre I realised that I had a radar honing in on every cough and sneeze of passers by. I really am getting worried about bringing something back into his room! My hands are cracked and hurting loads from the excessive hand washing.

So goodnight from Team Taylor at GOSH ON day T+1, see you on T+2!

One thought on “And breathe…”

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