Monday, 19 March 2012

No more wigglies ...

In truth not much has happened since last time. There was the little matter of Adam's central line coming out on the 9th. An event that prompted Adam to declare it had been 'the best week of my life', this despite spending all but one day of it in a hospital bed. After the happy drugs they used out in Germany it was back to business as usual where Adam and anaesthetics are concerned. I had a meeting at the Royal Marsden first thing to discuss the current situation with Adam, and then followed on to St George's after lunch. I hadn't been there long when Alison's pager began alarming to indicate our presence was required in recovery. We could hear Adam shouting before we even got into the room. I walked in … and was promptly ordered back out again "TELL DAD TO GET OUT OF THE ROOM!" And if that wasn't enough "TELL DAD TO GO HOME." Pause for breath. "TELL. DAD. TO. GO. BACK. HOME!"

I retreated back out into the corridor from whence I'd come. A few minutes later they wheeled Adam out of recovery and back on to the adjacent Jungle Ward. I looked directly ahead out of the window, not daring to make eye contact with my wild child. Once on the ward Adam calmed down sufficiently to allow me to sit in the parents room; I still wasn't allowed in the bed bay where he was. As the anaesthetic wore off he started to come round and eventually I was allowed back into his world. Alison took off so she could get back to watch Jake play his cricket finals. And to be fair to Adam he had completely calmed down by this point, and never moaned once. He had lunch around 3pm, having eaten breakfast at 7am. At one point he had a look where his 'wigglies' had once been and gave me his considered verdict … awesome!

When he first got up out of bed, he stood rather oddly to the side of it, strangely unbalanced; even though his hickman line wasn't a great weight he was somehow subconsciously trying to compensate for it's absence. It didn't take him long to get used to being rid of it though. As we left the hospital to return to Epsom he pondered on how long it had been in. "Two-and-a-half years." he said "I never thought I'd have wigglies in for that long." And then, as if to justify this last statement when in fact I'm certain he'd never considered it before even for a minute "When it was first put in I thought maybe I'd need to have it in for like a year or something."

We drove back to Epsom General via home so that Adam could have a cooked tea. Yes it was unauthorised, yes I'm bad, and no I am not the least bit remorseful. He stayed in Epsom General for a further 48 hours antibiotics as a precaution, it not being uncommon for the removal of an infected line to lead to further infections. On Sunday Adam spent most of the day at home, and after returning to hospital for his evening antibiotics was formally discharged.

He stayed at home Monday through Wednesday, but was back at school Thursday and Friday. Two weeks off school and the only clinical symptom had been a temperature of just above 38 degrees for around an hour! He hasn't had any problems since and has been revelling in his new found freedoms. On Thursday, after he'd removed the dressing and butterfly stitch from the entry wound he fully immersed himself in a tub of bath water for the first time since 2009. He even toyed with the idea of having another bath on Friday evening even though that's his night off!

No more bungs to be changed for a while, no more dressings to be changed for a while. The skin around Adam's left nipple that only experienced fresh air for a few minutes each week is now free again, at least for a while. We will be doing blood draws every fortnight, but Adam is find with being cannulated for this. It's a small price to pay.

Adam is due to begin his eleventh, and penultimate, round of 13-cis-retinoic acid on 30th March, and on 11th April we go back to the Royal Marsden for a follow-up MRI. That will be six weeks since the last one, that showed no change in the suspicious node (or lesion) identified on the MRI in Germany five weeks before that. We are working with the Marsden on what to do next once we've completed a year of retinoic acid, but clearly everything depends on the MRI. As such, it continues to hang over our heads, but really there is no point dwelling on it right now. As much as ones inclination is to want to do something it really does seem that wait-and-observe is the most appropriate course of action at this particular time.

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