The Big Day - in photos

Having got up at 4.25am and been on the go ever since (we left hospital 6pm and got home at 9.20pm after J got upset in the car and needed a break at a service station) this is going to be minimalistic but I hope to write more tomorrow.

The good news is that J is ok. The cast is on  and it's purple and blue - but he didn't get any say in the matter :-(

He was a bit wobbly after the procedure (the new cast is heavier and affected his balance) and found it hard to get up from certain positions. But he attacked lunch with gusto within an hour of leaving recovery and went off to play in the huge play area, running, climbing and everything with few signs of it having affected him!

5.55am and J is etcha sketching as we set off in the car

 J looked  v peaceful till he spotted the camera...

 J said no to everything until one of the wonderful nurses let him "ping" the thermometer caps. He did it again and again and was much happier after that!

 J didn't want an identity bracelet and was refusing when suddenly bubbles appeared - the play specialist is an expert in distraction and spotted that we needed some help. Fantastic!

 Playdo. Spot froggy in the background adorned with the stickers J "earned" for putting on the bracelet. Spot the said bracelet now taken off on the table...

 Stickle brix. J loved them. V glad I got some at the NCT sale the other day.

 We went to the pre-op room about 9.20 (there were problems with beds for post-op so we were delayed). J had had a syringe of pre-med already and was drowsy on the way down (looked drunk!). By this stage he's pretty much out of it. The idea is that he won't remember the anaesthetic next time so he won't remember to hate it!

 Receiving the gas

 This is amazing - they agreed to take my camera into the operating theatre. The pics below are of the cast being applied.

 This is on the frame- after the undercoat is stitched on they then manipulate the spine.

 Plaster of paris is applied

 Now the layer we're familiar with - the coloured part.

 They cut a hole in the tummy to allow for expansion when eating (in the past it was found the stomach was distorted permanently and there were big probs)

 Note the monitor on J's ear (I think heart)

 The felt edging is applied to make it softer on the skin.

 This cast has two holes at the side for rib cage expansion.

 All done and a hug from froggy :-)

 J was on a nurses knee for an hour before they called me (his temp had gone down to 34 degrees so he was wrapped up in blankets). Here we are up in the ward afterwards. Note the huge gap above the shoulder. I guess it's for movement - but it makes him look v american footballerish in clothes!

 Right as rain.

 Back to normal - if it's not plugs it's poking tubes in the v accessible holes by the cot

 I got him a lovely balloon while I was waiting for the call to get him

 In the play area in the afternoon

 Dolls house

 Getting weary

 J got upset on the way home so we stopped at a service station. This is about 8.30pm having been on the go all day...

 I told the photographer to take more than one because one or other of us would have our eyes shut and J deliberately closed his eyes and laughed. He has a lovely sense of humour :-)

I will blog the details tomorrow.
Good night
All is quiet with J, so I'm hoping for a quiet night...


[infantile scoliosis J's diary blogspot]
http://infantilescoliosis-diary.blogspot.co.uk/

Tomorrow is the big day!

So we're here at last. Just a few hours away from J getting his first cast applied under GA on a frame (not exactly Mehta, but similar).

Thank you to all who have contacted me with your thoughts and good wishes - they are very much appreciated.

We have been very busy over the last few days (after taking J's cast off on Friday, I've wanted to make the most of everything we won't be able to do for a long time):

• We swam at the local pool where there are extra fun features eg mini fountains, rapids, slides etc. J was a little wary for the first 5 minutes (who wouldn't be with all the noise and strange things to look at) but was so happy and relaxed after a short while. He loved sitting on or by the mini fountains and cascades. 
• We went to Thomasland on Monday (Drayton Manor theme park). Fantastic day out. He was so adventurous too - going on the rides that went up high (eg the helicopter and bus) as well as the standard train ride type. There's also a zoo there and he was delighted when the lizards and monitors flicked their tongues (one of his favourite parts of Peppa Pig is where Lulu the lizard sticks out her very long tongue - J imitates it every time). I would post photos, but I need some sleep! Definitely would love to go back again (and thanks to Tescos Clubcard it only cost £10 to get in!) Of course we can go even with J in cast - but it was just a lovely treat for us all and important to share that together before the big casting.  
• Lots of baths and playing in sand (J has taken to lying down in the sand and "swimming"! Of course that is strictly forbidden in cast, so it was great to encourage him to make the most of it)

I haven't known how much to tell J about what's going to happen. He's 22 months and lives very much in the present. But he is so aware of what's happening too. In the end I did say tonight that we're going to the hospital tomorrow and he'll get a new type of cast - with a hole in the tummy where I can tickle him (and we then did lots of tickling). I did say it'll be an early start and that we'd meet Grandad later tomorrow. I haven't used the hospital books we have (eg Topsy and Tim) because Tim looked so unhappy in so many of the pictures. I don't want him to pick up any negative stuff. It's ok if he feels negative tomorrow about something and I can deal with that, but there's no point in giving the impression that that's what he will feel.

I did get out the doctor's set tonight and we watched the 'Maisy dressing up as a doctor'episode. We got out all the bits (eg thermometer or stethoscope) as she did. J was moderately interested (not overly so).

What may be hard is:
1. Getting up so early! I'll be in "entertainer mode" for the day which is tiring anyway (though it definitely helps to keep our spirits up). Hopefully he'll be groggy tomorrow night and sleep well so I can collapse and catch up... or is that wishful thinking??
2. J having to fast from now till the op. However, he ate a HUGE amount tonight (a whole chicken thigh with lots of pasta in pesto and veg; blueberries and icecream; a large yoghurt; a beaker of milk) so he shouldn't be too hungry when we set off at 5.30am!
3. What do I do to distract myself during the 3 hours when he's under GA/away? I'm taking a book, but may also take a couple of photo albums that need labelling - it's a good thing to get done and is pretty mindless but satisfying.
4. Getting him comfortable sitting in the carseat or lying in bed. I don't know how it'll feel to have this huge weight wrapped round him and rubbing in new places.

Right. I need to pop the last few things in the car ready for tomorrow and then it's time for bed.

Goodnight little man. Sleep tight.

J - my big strong tree

Our 2 copies of 'Cole and the Crooked Flower' arrived from the US yesterday.

I took it out to read to J this morning and we read it *FOUR* times one after another!!

He followed the story intently and was v v v v v interested by the last page where there's a photo of the real Cole (the little boy whose father wrote the book) wearing a pink Mehta cast covered in skulls! J pointed to that photo a lot. I don't think he's seen a picture of someone else in cast. I'll have to try and get some more from the web. There are also two x-rays - one of Cole at 57 degrees and one at 2 degrees before and after treatment.

I gave a copy to the Nursery this morning and they were delighted - they have been wanting to help prepare J but, like me, they have hesitated about the 'preparing for hospital' books as that's only part of the story. With such a long-term condition it's great to have a book with a happy end: the doctors are helping your spine to grow straight by using casts just as the doctor in the book helped Cole's flower (and his back!) to grow straight again.

As we were leaving the house I said to J "come on my little flower". This is not a term of endearment I usually use for him and he definitely didn't like it. He scowled and said "no". So I said "come on my big strong tree" and he smiled and came :-)


Dear J, my big strong tree, I really hope the doctors *will* make your back straight(er?). Love Mummy

New bathing techniques #1

There are a number of things where we need to find new ways to do them - including giving J a bath and washing his hair. Up until now I have relied on the fortnightly baths but from 21 March for the next couple of years, it will only be possible to bathe J every 3 months. So last night I decided to try a new bathing technique. He was also quite smelly last night which speeded up the decision to try experimenting!

I've decided to leave the current cast on until later this week and give him a few days off before we go to the hospital for the new treatment. We can't leave it too long, but it will be nice to have some time. I'm thinking perhaps of taking him to a fun pool with flumes etc on Friday and maybe swimming over the weekend too.

J was delighted at the word 'bath', pulled at his straps and ran to the kitchen drawer to get the scissors (in fact they are now deliberately kept elsewhere but I don't think he has realised that!). I explained it was a "mini-bath" and filled up a washing up bowl. He was a bit uncertain at first (he sat on my lap but refused to put his feet in the water). Once we'd worked out that the step was the right height for him to sit on, he was ok. After a few minutes he started to enjoy it and splashed a little with his feet. When I handed him the body wash (gel), he cleaned his knees and belly button. Several times :-) I can confirm that his belly button is VERY clean now.

I meant to add that we finished off with a quick rinse in the shower (he had done a wee in the washing up bowl, so I wanted to get him properly clean!). That didn't go well. J wanted the bath mat because it was slippy and then he wanted to sit down. But all in all, he enjoyed the experience and he is definitely cleaner.  

Local news coverage about magnetic growth rods

Last week there was an item on the local news about Birmingham Royal Orthopaedic Hospital. It featured a 9 year old girl who was about to have magnetic growth rods inserted - see the link below. You will see it's Mr Marks (who was J's consultant at BROH) who talks about the new treatment.

central tonight news clip "Spinal Surgery Thu Mar 1 2012 A nine year old girl is the first person in the Midlands to have surgery for spinal deformity using a new technique. Rhiannon Medlyn is having magnetic rods put into her back which should fix curves in her spine."

J's new consultant at Oxford Mr Nnadi is leading the trial on this new treatment.

link to trial details at Oxford

My thoughts on seeing this clip:

1. I was struck by the degree of pain this girl is suffering. When I asked about the effect of J's scoliosis on him in later life, I was told that below 40 degrees, people don't have any more back pain than other adults. I was also told that children of his age don't suffer pain from the curves. I wonder what age/angle the pain starts? J's curve is measuring between 30 and 36 depending on the xray and who reads it. This girl talks about pain in her shoulders, back and legs. She's only 9. I don't know what angles she has. I sincerely hope that we can help J's curves improve so that he doesn't suffer pain from his scoliosis.

2. I hope that the new treatment we start on 21 March (just over 2 weeks to go) can help correct the angles. I hope we don't have to go down the surgery route (however good it is that they've got a technique where they don't have to repeatedly open up the wounds every 6 months).

3. I do wonder about the motivation of the medical profession (please note that I'm not being specific about any particular doctor - I'm just making a general observation) when they have new gadgets like this. The whole approach of Miss Mehta was to achieve *gentle* correction using serial casting at an early age. I would imagion some surgeons find it much more exciting to have new equipment and hi-tech gadgets. Not that it isn't appropriate in some cases and it's great if it avoids repeatedly opening patients up, but I know there isn't much research into scoliosis compared with other conditions and whizzy things might be more attractive than gentle but also effective means... am I being too cynical?