Thursday, 11 December 2008

No more Thursdays!

I am starting to take this personally.

Mog woke up this morning after a whole night in her own bed, first in a while. Lovely. OK, so she woke up at 5 rather than 7 but that's a minor matter, and her ceiling light show plus a spot of Norah Jones fixed her up for another hour or so before her secretions got the better of her and she needed to be in her wheelchair. But she was smiling, happy, keen to participate in the whole choosing a hairband thing, and only slightly put out about the idea of being strapped into her chair and maybe bending in the middle a bit.

Little Fish slept in until after Mog's bus had been and gone, then woke up and had a quick bite of breakfast before we trundled off to preschool. So far, so fairly unfraught. Dropped her off and walked home, hoping to grab some coffee before my next commitment. Sadly my visitor was waiting on the doorstep so I had to share my coffee, so we got stuck straight in to the morning's project - emptying the cupboard under the stairs. I live in a flat, so I have no attic, but my upstairs neighbour's stairwell gives us a nice storage cupboard. Full, as it turns out, of hundreds of medium tena slips (Goldie's), half a dozen sleeping bags, assorted bits and pieces of clothing and old wheelchairs (anyone need a Jay 2 back cushion or the black padded cover for a wheeled commode?), old gaiters and back braces, and sewing supplies, and then finally gold dust, 48 cartridges for our giant nappy bin. Cartridges which are no longer made, so our bin has been standing unusable for six months. It has now been recomissioned, and not a day too soon.

People have asked why Little Fish is Little Fish. Here's why:
After we sorted out the cupboard, we put LF's room back together but with the bed in a different position. It's great this way around - the bed finally sits under the hoist which will be useful as she gets older, and she has more usable play space in the middle. Plus all the things which were shoved stored under her bed are now in the cupboard, so her bed can come down to its lowest height, and she can start practicing getting herself in and out of it. Fun times.

So, that was our morning, child free yes but not entirely relaxing. And just as we were finishing up, I was calculating that I would still have around three hours to sit down and enjoy doing nothing but drink Lemsips, when the phone rang. Not school for once, preschool instead "we think LF is poorly, can you come and pick her up please?"

Abandoning Lemsip and coffee (two separate cups in case you were worried) I struck out for preschool and found Little Fish sitting and shaking on her 1:1's lap. Really shaking, very blue, red hot body and icy cold hands. It is Thursday, after all. Get her home and take her temperature, she's reading the same fever Mog had last week. Wonderful.

Ibuprofen, Paracetamol, the Flucloxacillin she's taking for her staph infection (and isn't that supposed to somehow insure her against getting ill with other things? Seems very unfair to have her getting poorly when already taking antibiotics), water and some vitamins, and she perks up enough to watch the teletubbies for a bit. So we pass a reasonably peaceful couple of hours.

And then school rings "Mog's coughing again and drowning a lot, and we're not happy to put her on the school bus". Excellent. Our bus escorts are not trained to give medicines or medical treatment. Most of the time this isn't too much of a problem; we live about five minutes' drive from school, and Mog should be the last child loaded onto the bus and the first off, which gives plenty of time to give midazolam if she starts seizing on the bus. Can't really leave her five minutes without breathing though if she suddenly needs suctioning. So for two days in a row now I've had to pick her up from school. I'm rather puzzled about how it's any safer for me to collect her and drive her home alone, than it is for her to be driven home by a driver with an escort at least able to watch her drown and stop breathing. I suppose it's one of those "Magical Mother" things. That or they've overestimated LF's ability with a suction catheter.

However, we do get home safely, and Little Fish takes a break from Teletubbies to look after her babies. Elmo baby is apparently very tired, so needed to be hooked up to his Nippy ventilator"There, soon be sleeping again baby".

And then the evening comes. I start to get Little Fish ready for bed, and talk her into her Upsy Daisy pyjamas. Get her nearly sorted when the flucloxacillin finally kicks in - turns out that erythromycin bungs things up but my goodness fluclox gets it going again. A change, and another change, and so she isn't quite in bed when our evening carer arrives, with new carer shadowing.

Cue one very overtired, poorly, muddled and confused little girl. Had I known she was going to be poorly, I would not have chosen today to make major changes to her bedroom layout. In bed but "I want you lie down in bed with me Mummy. You sleep in ere tonight Mummy" and major squawks if I shift away from her bed to do anything else.

New carer, very nervous and somewhat overwhelmed. Experienced carer very experienced, but one of Goldie's carers who only sees Mog now when our main carers are on holiday, so not totally au fait with all her care needs. And definitely freaked by the sudden need for suction.

Mog reacting to a combination of very sore bottom, carer not full of confidence, and Mog's own panic at lying flat for a shower, screeching mightily.

Eventually Mog settles, the carers shower, I sit with Little Fish. Both girls settle to a steady grizzle, so I retreat to the sitting room. And suddenly an almighty scream from Mog at which point I throw myself into her bedroom screeching myself to get the carers to get away from my child, stop drying her hair and step away from her. Undo her straps and feed, and carry her through to LF's room, LF screeching too. Carers follow like sheep, despite my "go away" glare. New carer deeply upset that I think she's hurt Mog with the hairdyer, and despite the fact both girls cry louder as soon as either carer speaks or approaches, I have to go into long technical description of muscle spasms and the way Mog's CP affects her.

Eventually they leave, girls calm somewhat, and I gather Mog up to post her into her own bed. Where she twists up like a screaming pretzel again. I give her midazolam as quicker than diazepam. And she somehow inhales it, and is now breathing white midazolam infused dribble bubbles - like very heady toothpaste. It begins to have an effect, not especially helpful at a time when she really could do with having a good cough. But finally she is calm again, leaving me considering the fact that rectal diazepam may be a better option if she can't do this swallowing thing any more (And I know the buccal stuff shouldn't need swallowing, I'm just cruddy at giving it, alright? Who knew half a milliliter could be inhaled that far anyway?). And then finally I am free to return to the hysterical Litte Fish and reassure her that the strange ladies were only there to help and weren't staying and that I wasn't going.

And so I am sitting in that no man's land in the hall, neutral territory between one shallowly sleepy Little Fish who is beginning to cough up wads of goo all by herself, and Mog who is waking up and shaking off the Midazolam and apparently going straight back into extended spasms. Norah and the light show not cutting it this time, I must go and straighten her out.

And now the door is bolted and no one is going to be welcome until morning!


PS Edited to clarify the fact that I am entirely in agreement with school that it is not safe for Mog to travel on the bus when she needs suctioning - my frustration is not with school but with the policy makers who have decided transportation staff should not be trained to deal with medical emergencies. And with life in general, really quite a lot actually. Forgive me for not making this clearer earlier on; I was rushing because Mog was beginning to grizzle. Silly me for thinking it was just the Midazolam wearing off, she was in fact sitting in a small ocean of poo, and had somehow managed to get her fist in it and rub it all over the bed, not bad for a child with no voluntary movements. Big apologies and a clean up for her and the bed. My washing machine is sulking now.


Elinor said...

Crikey Tia! here;s wishing you all a peaceful night.

Alesha said...

Ditto Elinor's comment! :-)


Anonymous said...

Sleep well! UGH, my sentiments with the transporttion thing. We ran into the same thing with the Elf and I began to wonder if somehow they thought one person driving a van with two disabled children was safer that a bus driver and an aide?
I will never figure that out. We are super women! We can do it all!

Anonymous said...

Oh, I forgot you can get midazolam in a liquid form that you can run through the feeding tube. That is the form we use here in the states.
I am the first one to use it in this area for seizure control.

Tina said...

Nothing useful to add...other thasn my prayers. I do hope you managed to rest at least.
much love

MOM2_4 said...

HUGS!! Praying you will get a peaceful nights sleep and that Firday will be less full of drama!!

Anonymous said...

Celyn manages to inhale 0.1 ml's of midaozlan (w use it for muscle spasms and lack of sleep combo at that level)
Its a tiny drop but she still chokes and vons and gags.
Must be a super-power.


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