Saturday, 7 June 2008

Not the best 24 hours ever.

Fridays are nice days. Little Fish doesn't have preschool or nursery, so we have a full day to do things together. Yesterday we decided to catch the big red bus into Oxford and go shopping for Mog's birthday.

It started well - the bus arrived on time, the wheelchair spot was not full of buggies and luggage, and it wasn't raining. LF had some interesting ideas on suitable birthday presents for her big sister, but eventually we settled on some pretty multi coloured candles for her cake, a wooden music box with dancing animals on the top, and some pyjamas.

Little Fish was quite taken with a little rain mac for herself but eventually decided she wanted to leave the pretty purple floral mac in with the boys' socks rather than take the effort to queue and pay. Fair enough. And apologies to the shop staff following in our wake.

I found a gorgeously fluffy new dressing gown (I have three dressing gowns. I've had them for a long time. There's a winter one, a summer one, and an inbetweeny one. And they've all disappeared), and a nice new nightie. Perhaps someone can answer me this question - why do so many pyjamas and nighties have strappy tops? What's the point of a strappy top? Especially when twinned with fleecy trousers. Surely your trousers are under the bedcovers and it's the shoulders which need the warmth?

But I digress. Shopping done, we went to find some lunch. Little Fish was very excited by the possibility of some geddi (spaghetti) and dead (bread), so we tried out a new Italian place. Geddi, dead, and some rather delicious truffle tagliatelle for me. LF behaved beautifully, trying out the incredibly long and twizzly spaghetti fork before settling for the spoon, talking to the waiter, and generally just being a pleasant dinner companion.

It was as we were on the bus on the way home that things started to go wrong. A phone call from school - Mog is fitting, hasn't responded to the rescue medication, what did I want them to do? I suggested they call an ambulance, and we discussed various options as to what to do in the meantime, as I willed fellow bus passengers not to want to stop anywhere except at our stop. It was as I ended the call that I realised the rest of the bus had gone silent, obviously "call an ambulance" is not something you hear every day in normal mobile phone conversations.

We got off the red bus and leapt round the corner and into our own bus, reaching school after the First Responder but before the big ambulance. Mog was indeed still fitting merrily. So, Mog into the ambulance together with her class teacher - if I'd gone in the ambulance I'd have had to leave our bus and LF's chair at school all weekend.

So, teacher in the ambulance with Mog. LF and I following on behind as quickly as we could without the blues and twos. Get to hospital, meet up with Mog down in the bowels of the A and E department, and watch and wait. We give her a second dose of her rescue med with no effect. She gets Lorazepam, which appears to make her fit more (doctor said impossible, nurse and I watched her go from flickery to JUMPY as the medicine went in). Much debate but eventually Phenytoin did the trick and she settled down, five hours after the seizure began.

It was a busy day for school too - in the bay opposite us in A and E lay another school pupil; it isn't every day they have to call the paras out twice.

We then had the pleasure of being transferred to the ward. Now when Mog is startled out of sleep, she will go into a seizure. Being trundled through the hospital startled her somewhat, so she arrived on the ward in a fullblown Mog fit. I think it might have been this which ensured we had two doctors with us within seconds of landing. However they were happy that this was a normal Mog fit and let it run its course.

A roughish night - Mog deeply uncomfortable, but thankfully no more seizures. We think the problem is constipation, combined with a drugs wean and no sleep on Thursday night. She has no infections anywhere and apart from being sore, is well in herself. I had cut back on her laxatives to allow her nappy rash time to heal, so now we're calling out Dynarod sending in the big guns and hope that'll sort everything out for her. For once in my life I'm actually looking forwards to cleaning up a large brown river; it'll make things so much better for her once it happens.

Mog's feeling very sorry for herself; she's full of holes where they took bloods and gave drugs, probably has a stonking headache from all the meds, and is ready for a proper night's sleep. Hopefully she'll wake up much happier in the morning (and not until the morning).

Little Fish meanwhile is very pleased to have spent the night with my parents and equally pleased to have had a morning on the ward enchanting the nurses. After our previous hospital stay this one was a pleasure; the nurses took the time to get to know Mog (and Little Fish), they chased doctors and were proactive with pain relief, placed Mog in a bed which was easily visible by them, and made sure treatment didn't interfere with her need for sleep. Can't ask for more really!

Now Mog's crying again so I must see what else I can give her - she's definitely not wanting cuddles at the moment which is most unlike her.


Tina said...

So pleaed you are home, here's to bron rivers and easy tummy...Rosie was doingthe Rosie thing in need of her own explosion today too...maybe we will be changing smelly girls in unison instead of chasing each other to hospital!
much love

Doorless said...

I do hope Mog is doing better today and all are having a peaceful time at home.

MOM2_4 said...

OH TIA!! Praying you will have things figured out her sortly and all be able to get a good nights sleep!

Alesha said...

Those big meds leave Isaac so unconsolable. He fusses or cries or hollers. They just make him so unhappy. I hate to use them, but what else can you do.

And FIVE hours!!! Oh my goodness! Isaac has had some for nearly 2 hours (while in the hospital), but his longest grand mal was about 15 minutes. Of course, some days, he's in and out of seizures so fast ALL day it's hard to tell. If we added all the time together it would be scary, wouldn't it?

Well, bless her heart. I pray the constipation is solved quickly. We have also seen increased seizures with constipation. Isn't that curious?

The doctor upped Isaac's night Clobazam by 5 mg. I swear, last night, I don't know if he ever slept. He just laid there snoring with his eyes open. He was so...well, for lack of a better work..."stoned"! And we just hate that!!! I pray he truly sleeps tonight.

I pray your girlies sleep as well, and that Mog can find her happy place and be peaceful and pain-free.


Our little people...some days we don't know what to do with them and every day we know we don't want to live without them.

(To quote a friend) I'm glad I know WHO holds tomorrow.

Sweet dreams, Tia,

Elinor said...

Crikey Tia, never a dull moment! Hoping Mog feels better very soon.

Gill Saunders said...


I f you want a free pack of Boudreaux's Butt Paste for nappy rash prevention and cure just send these guys a messsage via the contacts pag:


I know they have samples left as we got some.



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