It’s a corker. A hint of Autumn chill despite being 20-some degrees. Just a teeny bit of work to do, otherwise treehouse building.
We spoke to the doc’s office yesterday and need to wait another 3 weeks for Sophie’s results 😐
Very serious sense of humour loss yesterday, better today. And hey, it’s party season! Fancy-dress this afternoon ..
My car is cute. My car is satisfyingly, counter-culturally compact. The longer I live in South Africa the stronger the impulse to park my car out of sight and walk the last few hundred yards to meetings.
For the past few weeks my car’s home has been under a fig tree in the yard. Today it looks like a fig-eating bird has ingested it and then passed it. Even though I drove really really fast to my meeting this afternoon (to try to blow it clean), it still looked like a sort of smallish, coarse-grained dinosaur dropping between the two shiny BMWs at the investment bank.
So now my car is counter-culturally compact and stop-and-stare dirty. It’s a stereotype breaker, my car. I’d wash it if it wasn’t such a powerful statement.
Josie had her sixth birthday party yesterday. Six. Good grief. It was great, thanks entirely to MGW.
There were cutout figures of Buzz Lightyear and a Space Princess to have pictures taken with, a hunt for moon rocks and a space kitten that arrived in its own spaceship and needed rescuing. Jo and the kitten have been inseperable since. The kitten travels on the end of a leash, stuffed into a shoe which is fitted to a roller skate. Not a real kitten, you understand.
Kids parties completely freak me out. I’m of some use at the decorating-the-party-room stage, but the event is too much for me. Something about organised activities and pre-schoolers. Is that not an absolute contradiction?
Josie loved her party and spent some time on the phone afterwards telling everyone all about it.
“The reserve offers the visitor some of the most striking scenery in the Karoo as well as fascinating animals and plants that comes to life on the back of a horse.”
… but I have more pressing things to think about just now.
On Monday we went to Kirstenbosch to meet up with … uhh … let’s just say Mr & Mrs Smith.
It was fun to catch up with Patrick and Dallah and little Samuel.
It’s been a good day. Presents and baked cheesecake and scones with jam and cream and family and snuggly winter stay-huddled-inside weather in the morning with sunny winter go-for-a-walk weather in the afternoon.
Luverly.
There’s no tea quite as good as hospital tea. When the Sister came in at 5am yesterday I was sleeping on my camp mat on the floor of Sophie’s room (she had the candour to laugh once her eyes had adjusted to the dark). If you need to wake up in that situation there’s not a better way to do it.
After the manic sedation-related behaviour of Thursday evening, Friday was relatively calm. Sophie was badly affected by the sedative all day on Friday. On Thursday she was happily doing all her puzzles, on Friday she could just manage the big four-piece ones. She also couldn’t walk, which is perhaps the better measure of sedation, and was very sad and weepy. It’s very difficult seeing your little girl struggling like that. She’s slept for at least half of the last 24 hours and is much better now.
The blood for testing was supposed to be drawn between the MRI and wiring up on Thursday, but because that dragged on pretty late there were no pathology drivers available when the time came, so bloods were to be done on Friday while Sophie was sedated for removal of the electrodes. Probably unsurprisingly, there was some missing co-ordination and we wound up having to take 12 vials of blood for testing while Sophie was wide awake. Being held down by her Mum & Dad. Nice.
Blood samples have gone to labs at Constantiaberg, Palotti, Red Cross Childrens Hospital and some overseas. Results should trickle in over the next two weeks or so.
The humour highlight of our visit was without question the electrode removal … so blood had been taken and everyone (everyone who wasn’t staff) was a little shaken, when in comes a nurse sent to remove the electrodes from Sophie’s scalp. She sort of hovers over Sophie for a few seconds, then says, “I don’t think I’ll just pull them off, it looks like it might hurt.”
So help me.
It’s true.
To her eternal credit, while my jaw was still on the floor, MGW calmly looked at her and said, “Ummm, usually they put something on them first to dissolve the glue.” After a brief period of consultation, the nurse reappeared with gloves, swabs and acetone. She had a stab and concluded that we’d need to sedate. I had her leave her tools in the room.
We didn’t want Sophie sedated again just to remove the electrodes so Michelle & I did it ourselves. Just like last time. The trick is to do the minimum possible to remove the electrodes. This takes some time. Acetone stinks, is freezing on the skin because it evaporates before you have a chance to actually do anything with it, is toxic and can bring on seizures, and doesn’t actually do the job very well. When the electrodes are off, the glue on Sophie’s scalp is still very much in place. It’ll take a month to get the 20-odd blobs off and out of her hair bit by bit.
It is very good to have her home and see her smiling again today (and doing puzzles). And eating sausage.
It’s that time again. Sophie’s on the bed across the room with a loom of wires glued to her scalp and her head bandaged like Chief Inspector Clouseau in a particularly poor disgweez.
It was supposed to be a smooth-running day at the doc’s – admit, sedate, MRI, X-Ray, bloods, wire up, wake up, play with puzzles and watch DVDs, sleep with the monitor (hmmm, reminds me of someone I once knew), wake up, sedate for removal of electrodes, go home.
The first sign that things might not be as they seemed was when we arrived at admission to be told ours wasn’t one of the set of neatly printed names arranged on the counter. I looked. It wasn’t. We then discovered that – quelle horreur – we were also not among those only-slightly-unfortunate individuals who had had their names entered on the system, just not printed out or arranged.
We were sent to sit in no-mans land with the truly unlucky ones. The ones who might well have walked in off the street on the off-chance they might cadge an MRI and a bit of free coffee. I don’t like waiting to be called. I called two of the specialists’ rooms and we were called out from our spot on the sea of green carpet, to discover that November, when we last went through all this, was just too long ago to warrant keeping our records, so we’d have to capture the admission again from scratch.
Now I’m a good-humoured guy and can take all this in my stride. And smile. And say, “Thank you”. I understand bad systems and processes. We got upstairs to the neuro ward and our room was in use. Now that’s a whole other thing, see? Admission smission, but I don’t put down my bags, I settle. I’ve enjoyed something of a nomadic existence, and where I’m putting my stuff matters to me, not because I want it to be permanent, but because it is transitory and I want to enjoy it while it lasts.
It may have been transitory but it lasted rather longer than anticipated. Sophie built all her Barney puzzles, as well as two sets of nursery rhyme puzzles and a nondescript set of ELC puzzles, and read her two new books from Scott – all whilst being closely monitored by yours truly who needed to make sure that if she needed to go it happened into some sort of receptacle.
She didn’t and eventually the MR unit was ready for her. She had what looked like about 8cc of chloral hydrate and dropped off to sleep on the way to the unit. We had a little wait there for the machine to be free, and when I put her onto the slidy bit she woke up. “At-choo!” said Sophie. “Where’s the bed?”. It is a little confusing waking up somewhere you didn’t fall asleep with a sedative active in your system.
I took her back to her bed. “At-choo!” said Sophie. “Where’s telly?”. In the other room. “Gone. G-o-o-o-o-o-o-o-o-ne.” 5cc chloral hydrate. “At-choo!” said Sohie. “At-choo! At-choo! At-choo!” .. “I don’t think the sedative’s working,” said the doctor, “she’s pretending to sneeze”. 10cc Chloral Hydrate. “Want movie n-o-o-o-w”. Much thrashing and very worrisome overdose-like symptoms (to father, carrying her in his arms) and then collapse, MRI, X-Ray and back upstairs to wire up for the eeg.
Which all brings us to now. With Sophie sleeping peacefully with enough chloral hydrate in her system to fell an adult rhino. This dad’s hoping she sleeps it off rather than waking to treat me to an adult rhino dose of grump.
“The Doctor Will Sue You Now” – rivetting previously unpublished chapter (Matthias Rath attempted litigation) from Ben Goldacre’s book Bad Science:
http://www.badscience.net/2009/04/matthias-rath-steal-this-chapter/
The more people who read this the better – spread it around with reference to the original source.
While it does nothing to excuse the idiocy of the recent South African political stance on HIV treatment, it reveals the influence of other players and lays blame appropriately.
While it’s sad that it couldn’t be in the original book, hopefully many many more people will get to read it with its free release online.
I’ve just had the most incredible 13 years of my life. Thanks MGW.