Has it really been that long since my last post? In a way it feels longer…
The evening of my last post, Pudding went down with a sickness bug. Little sleep, much washing of towels, endless hours of TV and four days without hearing the word ‘Ungry!’ from him, and at last I thought he was feeling better.
Then it was time to head to Manchester for the next trial dose.
Even though it is now exactly a year since the diagnosis of MPS II (Hunter Syndrome) was confirmed, there are still days when I find it hard to take in. Sometimes it just seems so unlikely that our son can have such a condition. We’re just a normal family with two gorgeous boys, aren’t we?
Then there are the times like these last few days when I have no choice but to admit the existence of MPS. We had three overnight stays this visit – two of them in hospital.
The ward is lovely, and the people fantastic. I’m grateful, I really am. But…
… my son, who is still feeling a little under the weather, sees the nurse in an apron approach him with a tray and starts screaming. He is held tight by his father and they start looking for a vein. Like many with MPS, his skin is thick and the elbow joints don’t straighten fully so cannulas are never easy. The distraction of TV doesn’t work this time, and he struggles violently to fight them off. He looks at me with desperate red eyes and yells ‘Mummy! Mummy! Mummy!’ but I can do nothing except press my face against his, and try to calm him. It’s hard to even whisper as my voice is breaking with tears. I don’t want to cry in front of everybody. I want to be strong for him. I have no concept of time and no idea how long he has been crying. They ask if they should take a break, but it has to be done so I say no, even though I want to shout at them to leave him alone. Eventually it’s in and bleeds well. But by now, he’s beside himself and the pre-meds he is given are vomited straight up again. My poor boy is exhausted. Even when he does fall asleep his breath continues to catch in little hiccuping sobs for ten minutes. And I know we can’t let him rest for long, as he still needs to take the medicine again and there is another needle to go…
He spent the rest of the afternoon slumped on the bed looking pale and limp.
Of course, when things have been bad they usually get better again. The next day we had an audiology appointment that shows his hearing is still doing ok with the grommets in, and he is almost at the developmental stage where he can do the proper test. (Waiting to hear the beep BEFORE he jumps the little men into the boat is still a bit beyond him). We also escaped to the nearby museum that afternoon for a hot chocolate and cream scone (his appetite was coming back) and although I got more soaked than a drowned rat on the way back, hospitals are a great place for drying things out (including my eczema-prone hands, but I’m trying to be positive here)!
And best of all, when Pudding decided to get out of bed at 1.30am and run around the ward corridors waving a light sabre, I was able to go back to bed after two hours and leave the night nurse in charge of him. Apparently he only tried to escape from the ward a few times, didn’t destroy anything and was asleep by 4.30….
And then – home again, and the blessings of our own beds and familiar things around us. The school run and cuddles with Twiglet. Letting off steam in the playground. Ben and Jerrys icecream.
MPS governs our lives now in so many little ways. It isn’t just a bad dream that I can wipe away with the sleep from my eyes. It’s our reality. When I started this blog I gave it the subtitle ‘Learning to live with MPS II’ and that’s just what we’ll continue to do. Most of the time, we’re doing it pretty well.