Thursday, 14 July 2011


It all seemed like a good plan at the time. The bus needed a new back door, thanks to losing an altercation with a gate post. The diary was actually empty for two days, so sending it to the garage wouldn't be too much of an inconvenience.

It started well. Despite having no carer, the girls and I were up and dressed in time for Mog's school bus. The Little Princess and I loaded ourselves into our bus, after a brief pause to empty it of tent, camping equipment, oxygen, McDonald's Happy Meal boxes, etc. We drove to the garage, waving to Mog as her school is opposite the garage, and dropped the bus off. One very happy Little Princess and I walked into town to see if her new chair would fit onto the local buses, riding two stops before reversing off the bus to a chorus of cheers from thankfully good-natured passengers and driver. Hurrah.

We walk the rest of the way home, have a brief pause before setting off to walk to school. I hand tLP over to her TA, And my phone rings. It is Mog's school; Mog isn't well, will I go and take a look please? I walk back past our house and over to Mog's school, where one very happy grinny Mog is waiting to be taken home. We stay for a quick harness change at the wheelchair clinic, then grab her gear and I walk her home.

As I leave Mog's school, the phone rings. tLP is not well, will I come and take a look?

One brisk walk later, we are home, and thankfully tLP's TA agrees to walk her home to meet us.

And now I have at home one ridiculously well Mog, but a Mog whose suction pump is now plugged into the charger I had forgotten to send to school. Bad mother alert. And I have one Little Princess who is sweating buckets, in a lot of pain, and who just wants to lie on my lap and not move at all.

Lots of pain relief, we spend a couple of hours sorting out possible constipation issues, and as I try to work out the logistics of how to get both girls to hospital without our bus (which boils down to whose wheelchair should we leave behind and can I cram them both into a buggy somehow?), she settles a little and I decide it can wait for a while.

One horrible night, which she doesn't appear to remember, and one girl waking this morning alert and bright eyed, not needing any of the pain meds she has been living on for the past few days, and drawing a beautiful picture. And finding some scissors and cutting chunks out of her hair, but I'm trying to forget that bit.

But what has been happening just at night has now happened during the day (i.e. too much pain to cope with), so time to phone the hospital. Who, as expected, say to bring her in for a review. A quick warning call to Mog's school with an advance apology that any emergencies will mean calling an ambulance as I can't get there. A quick run down the list of people who might be able to meet Mog after school if necessary (note to self: list entirely too short, must cultivate non-working friends). And a long bus trip with a very happy Little Princess.

One happy and pain free LP up on the ward, examined and appears fine, but let's do a quick CT scan just in case. One fine CT scan and we are back to no problem showing. Which is not unexpected, since she is currently demonstrating handbrake turns in the corridor and building lego cities in the playroom. One prescription for slightly stronger pain relief, but only to be given as a one off, as it will mask potential problems. And then run for the bus, cancel the care and race Mog home.

So, we are home. Which is good news. Except that it's not, not really. Our current theory is that this is not to do with the operation, but is instead a sign that her VP Shunt is now working intermittently. It's still working too well to need changing, which is good. And it might sort itself out, which would be great. But it might very well not. And so we watch and wait and see. And have to bring her in next time the pain gets unbearable. Which sounds sensible, except that this seems to happen at 2AM. And whilst the garage have just returned the bus, I still don't relish the idea of getting both girls up in the middle of the night and transporting they and all their equipment, possibly repeatedly, until she has an episode which lasts long enough to be checked properly.

Oh, and did I mention that we got off the bus and she started crying, and has been complaining ever since that her head is sore. Until I say we'll have to go back to hospital, at which point she insists it is all better. And now I genuinely have no idea whether it is really sore, but she is able to hide it completely from the doctors, or whether it is all a big ploy for sympathy and to keep me by her side, and isn't anything like as bad as she is making out. Both are possibilities. I am tired.


1 comment:

Alesha said...

oh, wow, Tia...I do understand about those shunts. they can be so tricky. sometimes they can go on for months with the intermittent problems, too. will be praying that the problem shows itself quickly, leading to an even faster solution.

will be praying also, in case it's behavioral, that you'll be able to figure that out, too. :)



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