Thursday, 9 June 2011

Day 4 (I think)

Losing track of time a bit here.

A really good day today - look no tube! Cannula out and morphine replaced with ibuprofen. In her own words "Yay! I got my hand back!"

We had to celebrate both that and the third clear MRSA swab in a row by taking a tour of the hospital this afternoon; highlight being watching an ambulance restock and drive off.

A short visit to the schoolroom this morning, whilst Mummy made use of the decontamination chamber up in RMH. No showers for the Princess until the femoral line comes out, but maybe that won't be too long now.

Most favourite object this wonderful blue book, holding artwork and messages from all her classmates. Naming them all is great distraction therapy, and the nurses are all very very impressed with the beautiful drawings and lovely free writing.

All on course to get over to Helen House on Monday we hope.
Tia

Wednesday, 8 June 2011

Day 3

A mixed day.

A little leak overnight so lots of sitting up needing to be done during the day to try to keep things draining nicely. And a small girl with a wound painted in Friar's Balsam to seal the wound.

So, a morning in bed doing lots of painting with Grannie and the play lady, and a Mummy with license to grab coffee.

And then an hour with a majorly bloated tummy, a little bowel massage producing a lot of tummy bubbles and then a fairly messy vomit.

So lots of rest in the afternoon; stories with the play lady whilst Mummy went off to be tenderised and basted in orange, lavender and rosemary oils. An effect which produced beautifully relaxed shoulders until I had to brace the Little Princess over a bedpan later on.

Up in her chair for a couple of hours including an escape to buy maltesers and another colouring book, and a brief visit to the outdoor play area before a different kind of leak stopped play.

A rather moody girl, determined that she is not poorly and therefore should be allowed to go home. But with minimal appetite, the need for lots of downtime, and an absolute refusal to see any visitors today except Grannie.

Oh, and an ear infection to add into the mix; some predictable but painful side effects from the morphine, and a long night last night with a faulty humidifier.

Everyone still very pleased with her progress through and she is delighted not to need stickies on her chest tonight, just a bog standard Sats monitor on her toe.

Aromatherapy massage aside, I have so far collected the majority of possible bodily fluids on my comfortable trousers; I'm considering walking myself through a carwash somewhere for speed.
Tia

Tuesday, 7 June 2011

Day 2

One hot, tired, cross and very sore Little Princess now complaining of itchy toes and rods in her bottom. Morphine confusion? High temp? After effects of having people wiggle around in your brain? Who knows, but not fun.

One little girl definitely the loudest on HDU, now up on the ward where we have a nice little room to ourselves. Sadly not soundproof; the rest of the ward knows we are here. Happily there are only another six patients.

Sat up for 20 minutes at lunchtime, and managed to drive her own chair here (weepily) this afternoon. Impressed with the very big flat screen television on her bedroom wall; less impressed that people keep coming and poking and prodding at her. And noticing when we change which toe her probe is on which is impressive given her total lack of sensation in her feet.

Everything hurts nothing is right it is all my fault and she doesn't want me, but doesn't want me out of her sight either. This is I'm told a good sign; she is doing better than expected and better than most children one day post op. This we like.

We don't like the very limited pain relief options due to her other problems. We don't like the beep on the "press a button for morphine every 15 minutes" machine. We don't like having neuro obs and bright shiny lights and chest leads and thermometres and lots of lines and tubies.

We do like the iPad, although Mummy in unimpressed with her inability to sort out the wifi, having just handed lots of cash over to access it. We do like visitors as long as they don't touch. We do like one hand holding. But we don't like physios, and Mummy is struggling to understand the logic of having a complicated history taken in great detail and painstakingly entered into the computer on one ward, only to have to repeat the same info on moving wards because the computer systems are incompatible. And frustrated with the non-portability of drugs charts, and silly rules which state that if lactulose was written up at 2pm it must therefore be given at 2am, rather than morning and night.

But these are little things. She's well enough to be well hacked off. And this is good.

Tia

Little Princess

Easiest way to update everyone.

The Little Princess had her surgery (decompression of the foramen magnum, forgive me if it's misspelt) on Monday afternoon.

I saw her Monday evening and she was fine. Cross and exhausted, blood pressure a bit high but doing really well, talking, breathing for herself (mostly - she didn't really like not having her Nippy), and wiggling her arms. She's in HDU, I have a bed in the luxurious Ronald McDonald House, and we'll both be on Robins ward once she's a little more recovered.

Had a peaceful night I assume, since no one called me; I am just about to grab some breakfast and then go and find her.

No phones in HDU so messages/texts/emails will be responded to later.

Thanks for all your prayers and support,
Tia

Friday, 3 June 2011

Thomley Hall



Friends of ours suggested we meet at Thomley Activity Centre. I can only assume their daughter then decided she didn't fancy a day out with us, as she promptly had herself admitted to hospital with a chest infection.

So, being the kind, supportive friends that we are, we went without them.

First stop, the playrooms. Avoiding the huge soft play den, we found a girl's paradise, and whilst the Little Princess paused to consider which of the 37 dolls she needed to play with, Mog decided to bling up a postman's uniform.
I think it might just catch on, myself.

Dolls selected, we escaped outdoors and had fun with sand and water trays. Mog sat and dabbled her wrists* in the water as the LP exercised the babies.Another indoor interlude, to make bird feeders (lard and birdseed smashed into a pine cone; nice multisensory stuff) and bird scarers (CDs and coloured paper and trimmings on a kebab skewer; good lethal stuff), and considered the irony of making both items for the same garden.

Back out into bright daylight for fun on the bed swing
and a picnic lunch. Hot coffee, hurrah.

Both girls declined the aerial runway which was a shame. We did manage a fine improvised concerto for drainpipe and ballbearings (you probably had to be there), and a sniff at the sensory room, before heading back inside to have a go at some woodwork. Mog made a dolphin and tLP, an elephant.

And then outside again for the highlight of tLP's day.

Lean forwards

Lean backwards

And I can swing all by myself!

Tia


*Signs you might have cerebral palsy no. 307: you can most easily reach water and sand with your wrists rather than with your fingertips which are curled in towards your body.
Sign no. 308; your arm twists out so the white forearm is more tanned than the back of your hand.

Wednesday, 1 June 2011

JP


An Old Soul, passing through life, liked what he saw and decided to stay. Though everyone knew he was just passing through, this for-a-while child put down roots. And his branches grew high, and his shadow fell wide, and his quiet strength touched many lives.

A gentle spirit, deep roots of love held him fast as his branches shook and trembled. The winds of time, for us a breeze, were for this Old Soul a cyclone. And all too soon the branches snapped; the trunk was felled, and the old soul was free once more.

Now harsh light falls on those who had lived in his shade, and it hurts, for he has gone. But his roots are as deep as his branches were high, and they grow in those who love him. And his enemy, Time, cannot reach him now, and his roots will grow deeper and wider.

Goodbye, Jackanory - it's not only your parents who miss you,

Tia


Sunday, 29 May 2011

How not to pass time in the waiting room.

The scene; a small cottage hospital waiting room. Tall padded plastic chairs smelling slightly of stale urine, three year old People's Friends magazines stacked up, a tantalising but empty water cooler, and notice boards filled with information about domestic violence (left hand wall) or sexually transmitted diseases (right hand wall). To the left, Podiatry, to the right, Opthalmology. Facing the entrance, reception (with a large notice board requesting patients to take a seat), and a disabled toilet (stacked full of unused Zimmer frames and walking sticks, with a soap dispenser up at shoulder height when standing, and a loo roll holder three steps away from the loo).

Enter one mother and child, who opt to sit under the "have YOU been checked for Chlamydia?" and stare at the poster of a beaten child, this being marginally better than the alternative.

Opposite, one beautiful little girl introducing herself and her mother (and the window, and the flowers, and the magazines and the empty water cooler) in fluent Makaton. And under the window, a mother with another child.

The signer and her mother are called in, leaving the other mother and myself alone with two children. My beautiful, perfect, lovely child is sitting quietly in her wheelchair, having reversed it expertly into a gap in the row of seats so she is beside me. The other child is doing headstands on the chairs, kicking the walls with grubby shoes, sliding piles of magazines onto the floor, and staring.

Eventually he stares enough that his mother makes introductions, followed by the comment "Loads of disabled children here today, not usually like that." We escape to the loo, and return to find their place taken by another mother and son. Same school uniform, same ability to kick the walls whilst simultaneously performing a headstand on the chair and sending piles of magazines to a slippery death on the floor.

And my beautiful, perfect, lovely child executes a three point turn in the doorway, and glides to a stop beside me before unbuckling for a cuddle.

I lean over, pick her up, and it begins.

"What's wrong with her then?"
Biting down the urge to reply "Nothing, what's wrong with your son?" I instead go for "Her legs don't work." and turn away, to blow kisses down the back of my Little Princess' neck.
This response is however clearly insufficient, and my "Please go away now" vibes are clearly not working. Instead:
"Yes I can see that, but what's wrong with her? What's wrong with her legs? What's wrong with her?"
Sigh. "She has Spina Bifida now please stop asking questions. Her legs don't work but she understands everything and doesn't really want to talk about it so please go away and if you can't go away please find something else to talk about or read one of those magazines your son is destroying."

"Did you know?"
"Sorry?"
"Did you know, when you was pregnant, did you know she was going to have it?"
"She's adopted. So yes, I knew, and I'm very pleased to have her, and it worked out well for both of us didn't it?"

"Couldn't you have your own then?"
I avoid answering this one, and turn away again, hoping we have ended the conversation. But no:
"So, does she know?"
"Does she know what?"
"That she's adopted, does she know?"
She's sitting in my lap. She's six years old. I've just told you there's nothing wrong with her understanding. If she didn't before, she certainly does now!
"Yes, she knows."
"Oh, cos I think that's best isn't it? My mate, she's adopted twenty, and she always told them all." And my heart melts towards the woman who adopted twenty, and who apparently lives very locally, and I wonder who she is. And I try to see whatever it is this woman who has adopted twenty (because after all, if she has adopted twenty children she must be a pretty good judge of character by now) sees in this woman her friend. And whilst I'd like to say that I then see the whole conversation and this annoyingly tactless woman in a different light, I don't. I get side tracked by the possibility of adopting another dozen or so, and wondering how big this woman's house is, and thinking about zingy one liners I might have used to shut the conversation down, and what sort of thing the LP might say herself in these situations when she gets older.

But I do wonder, because although that short conversation actually contained most of my pet peeves in the space of around five minutes, the majority of strangers who feel the need to strike up conversation manage one or two of them. And they can't all mean to be that insulting, tactless, thoughtless and nosy, can they?

And then, thankfully, it was our turn to go in.
Tia

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