Floating on a millpond

T+142

We are approaching 5 months post transplant. Some days this fact blows me away, are we really almost half a year on from transplant? Other days those GOS isolation days seem a million miles away.

These last few weeks have ticked by with very little to mention (hence no posts.) This is undoubtedly a good thing given the weeks that followed our initial stay at GOS but it has also given me time to ask questions, think about our situation and ponder the near future.

As we approach the 5 month post transplant mark on October 16th it is with bewilderment that I realise that this whole episode began on November 15th 2013, almost a year ago. I see Children in Need adverts, merchandise etc and remember that it was the last day that Herbie attended school properly and that I went to work properly.
I don’t want another Christmas Day planned around community nurse visits and iv’s. I truly believed that Christmas 2014, post transplant, would be a very different, happy and carefree experience to the 2013 one that was all about iv’s, fevers and at times despair. It’s approaching fast and I have high hopes but now I ask myself

Will we be iv free?

Will we return to school/work in January?

Will we be free of lots of oral meds?

What does the immediate future hold for us all?

Tomorrow we return to GOS for our first immunology appointment post transplant with consultant Waseem Qasim. We know he is usually proactive. We have a list of questions needing answers, we have high hopes.

Herbie continues to be in fine form albeit slightly rounder than he was due to excessive hunger from steroids. He meets his fluid target easily each day and he is fever free now for well over 5 weeks. We feel that we are standing still, we need to restart the meds wean and let this new immune system begin to grow and settle. It’s a balancing act, an art even, to juggle these medicines and start to withdraw some without causing some reaction.

Last week the bloods came in, looking very good still

WCC 7.2
HB 13.3
Neutrophils 6.51
Lymphocytes 0.22
Platelets 159

The only worrying result was a huge jump in a liver result called ALT which had leapt into the 100’s, double what it should be. It could just be a steroid reaction as other liver results were fine or a rogue result but with the amount of meds he is on it is a worry. That said we had no response from GOS when they received the results so we are assuming that they are not worried.

So tomorrow we head off to The Big Smoke…keep everything crossed for an informative and positive appointment (and speedy too if that’s not too greedy!)

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