Friday, 4 July 2008

Another hard day's work

Eyes today, and Little Fish impressed the tester and myself by being able to identify the pictures on the very smallest greyscale thingy wotsit (are you impressed with my technical vocabulary?).
Tissue Viability next, who said Little Fish may need a minor op (another one) to have the extra overgranulation tissue sliced off as it may have grown too much to shrink back any other way.
Meanwhile, he wrote us a prescription for betnovate, to try for two weeks first. Let's hope it works - I can't see her going for the slicing option myself, even with local anaesthetic. Looked at her various pressure sores and wasn't especially worried, so we will plug on with trying to get them healed up. He did mention finding some silicone socks for her too - but unfortunately my google-fu is failing me, and I can only find silicone socks for iPods and mobile phones. I suspect these may not in fact solve the problem.

Dietitian next - and although Little Fish has gained weight, she has gained it more slowly than before, so is coming back down the percentile charts which is good.

There was an element of "Little Fish was here" about the hospital nursery today.
See Mog's feet? She woke up for a bit whilst we were there, and we found her a mysterious plastic and metal curtain thing.
It's actually a cleverly designed musical toy - when the dangly bits (again with the technical descriptions) come into contact with the metal pole at the top, it plays music. So Mog could play music by performing her favourite activity - kicking. Apparently it comes with a switch option too, so could potentially be used to operate a battery operated toy or perhaps a tape recorder. Potential for fun there, I think.

More hard developmental play work.
Followed by some hard physical activity.
An hours' wait at the optometry clinic next, to get Little Fish's glasses adjusted. Made friends with a little girl with Down's Syndrome and her mother which helped to kill the time.

Over to the main hospital to get the Betnovate prescription filled. The pharmacy is over in the main hospital which is a fair walk from the children's hospital, especially when walking with a child insisting on doing loop the loops in her powerchair (something about all the many people going "aaaaahhh LOOOK!!! She's driving it all by herself"* which makes her show off for some reason, I can't think why). We arrive at the pharmacy, queue, and eventually come face to face with a very grumpy pharmacist. Who takes the form, does not make eye contact, circles a bit of the form and says "it's not filled in right, I can't accept this". The problem? No hospital number written on the form. Name, date of birth, address, consultant's name and all the rest of it, but no little hospital number in the corner. And no, she won't phone the ward to find it, or look it up on their records. So we take the form (all this has been discussed with no eye contact and not even a sympathetic shrug, just a "you're an idiot for wasting my time and that smell I can smell, is that you?" expression on her face. Back to the children's hospital past more ooohs and aaahs and several people who watch Little Fish push herself and then decide she needs to be helped, grab the handlebars without asking LF or myself, and then seem surprised when LF either stops dead in a panic or continues to drive without reference to where they think she wants to go. I actually had to shout at one woman that LF was completely fine, knew where she was going and how to get there, and that you can't drive a powerchair by pushing on the back handles anyway before she would let go. Great.

Dropped the prescription back with the nursery nurse, who said she would fill out the missing bit and take it herself; I'll collect the cream from her this afternoon (Friday). As we were queueing for the lift to go back home, we bumped into Mog's social worker. She came over to us with two other social workers and we had a bit of a chat about Mog before making introductions. The first social worker with her was looking at the girls with a quizzical look on her face - and turned out to be the hospital social worker involved with Mog when she first came to me, age 5 months. Hadn't seen her since, so that was nice. And the second social worker was looking at LF in utter disbelief - "Is that Little Fish [Birth Surname]?". "Not any more, it's Little Fish [Our Surname] now, but yes, she did used to be". Complete shock on her face - and small wonder; last time she had seen Little Fish it was to have her Baptised and then discharged into palliative fostercare age 3 months. I hope it was a good shock!

Home time finally, or would have been - I got caught up in the radio4 afternoon play, so had to drive a very long route home in order to hear it all.

Little Fish's day was made complete by a visit from Grannie. Great joy and celebration, and much eating of vegetables without even noticing in the thrill of having "Dat MY Nanny 'ere".

Plonked both girls in the bath with the help of our carer, then tossed Little Fish into bed. Mog should have followed, but objected strenuously until about 10PM when she finally allowed the chloral hydrate to get working and drifted off. And all was peaceful until 4AM, when she woke up not miserable but drowning and spluttering. Up into her chair (no fever though, hurrah) and a spot of suction which helped but not hugely. Il Divo, paracetamol and some repositioning helped some more, and an early extra dose of glycopyrrulate helped even more. She's now grouching and cross but neither fitting nor drowning which is just about good enough for me.

Having done all that I am of course now wide awake myself, something which I will regret later on today. I do like sunrises, but I much prefer to watch them in December than in July.
Tia

*Whilst I do understand that the sight of a small child driving her own powerchair is interesting, cute, different, unusual, and all the rest of it; your own child is sitting in a too small buggy and has a shaved head with a massive ear to ear scar - would you be impressed if I stood in the corridor shouting about that?

6 comments:

MOM2_4 said...

whew what a day~!

the foot musical toy thingy is lovely! I'd love more info on it.

Praying for all to be well soon!!

Doorless said...

I have just last week ordered one for Mikayla only without the music because she is deaf. She loves dangled chains and beads.
People never cease to amaze me sometimes!
Hope the overgrowth clears up without surgery. I think once they put in a button it will clear. The set up she has has to be irritating and causing it to keep trying to heal. UGH!

mq, cb said...

I googled silicon socks as well and apart from versions for amputees, ipods and shotguns(!), I also found this link.

http://www.esources.co.uk/product/375/

Is this the sort of thing that you were looking for? If so, I wonder whether specialist stockists of diabetics' aids might have something useful.

mq, cb said...

I forgot to add that LF's picture from the optometry clinic is lovely. Such a happy smile.

Alesha said...

Wow! Busy day for you all!!!

My sympathies about people staring, pointing, whispering, ogling and worse yet - trying to help!!! ACK!

They did all of those things when Isaac was younger too, because he was so small in the wheelchair.

Now that he is bigger, apparently he's not so cute any more. They just avoid us now. It's almost as frustrating as the other!

So glad LF got those glasses adjusted! It's so hard to keep them in good shape, isn't it?

Praying that granuloma shrinks back for you.
Alesha

Alesha said...

Wow! Busy day for you all!!!

My sympathies about people staring, pointing, whispering, ogling and worse yet - trying to help!!! ACK!

They did all of those things when Isaac was younger too, because he was so small in the wheelchair.

Now that he is bigger, apparently he's not so cute any more. They just avoid us now. It's almost as frustrating as the other!

So glad LF got those glasses adjusted! It's so hard to keep them in good shape, isn't it?

Praying that granuloma shrinks back for you.
Alesha

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