2 Months On - A Quick Update

I can't believe it's only been just two months since Amy's operation. Things have settled down really well. Amy is back at school, starting on time with the rest of her year a couple of weeks ago, and is apparently not suffering from any of the tiredness we were anticipating.

I wrote a letter to the school's "medical co-ordinator" (they didn't have those when I was at school) explaining what she had had done and asking that she be excused PE, be allowed to leave lessons a couple of minutes early (to avoid being jostled in the corridor), stating that she may need help carrying her books, etc. The school have been really supportive - Amy even has a special card to prove to the teachers that she had a condition that may need certain support. Amy's never really liked PE, but the novelty of being excused seems to be giving way to boredom. The teachers have got her refereeing, evaluating the other student's performance, that sort of thing, which I don't think she necessarily enjoys either.

The residual smaller curve in her upper spine seems to be straightening out all on it's own. She's walking a lot easier now (we did three miles yesterday and it didn't seem to phase her), and although she still gets in and out of the car a little gingerly, she's no longer using cushions for support, nor is she dependent upon any form of pain relief whatsoever.

3 Week Post Operation Check-up

Amy went back to the hospital today for her post-operative check-up. It's been a little over three weeks since she had the operation.

Mr Williamson was pleased with her back. We'd been worried about a smaller curve towards the top of her spine that seems more obvious since the main curve was corrected (you can actually see it quite clearly on the "after" x-ray in my earlier post). Brad said this would probably correct itself over time, but that there was a 10% chance that she may have to have another operation in the future to correct the upper spine.

She still gets very tired after walking so they've taken some blood to test for anaemia (easily fixed with iron tablets). The numbness in her lower back is improving and Brad just restated that he had severed through a number of small nerves when he made the incision, this was normal, and would reduce over time. She's also all but stopped taking pain relief now, too.

Amy coughed when she was being examined so was sent for a chest x-ray to determine if the old chest infection everyone was so worried about immediately after the operation had returned. The x-ray came back clear, however.

We've got to go back in three months for another check up and more x-rays to see how things are developing. So all in all, good progress, but with some on-going worries about the smaller second curve in Amy's upper spine.

Numbness

Amy mentioned she had some numbness in her lower back today. There seemed to be two small areas below and to the right and left of her scar, about the size of a tennis ball, where I could scratch her skin and she could feel nothing. I phoned Mr Williamson's office for some advice and he called back later to explain this was all normal. Otherwise things continue to progress well with her mobility, although she continues to need a strong pain killer to get her going in the morning. She's due back at the Spire for a routine check-up on 13th August.

Operation Plus 1 Week

It's now been just over a week since Amy's operation and she's doing brilliantly. She's now sleeping through at night, although the big teenage sleep-ins seem to be on hold for a bit. I think she still wakes up in pain in first thing in the morning. Although this is easily ameliorated with paracetamol (or tramadol if the pain is bad), it seems to stop her getting back to sleep. The first two days she was out of hospital there was no holding her back and she was continually asking if she could go out for walks. However, she over-did it yesterday and spent a lot more time resting than she has of late - this is normal and the tiredness will continue, we're told, for a number of weeks yet. Her posture is increasingly good and she's walking with more ease as the days go by. Most of all, we've got out little girl back - her happy pre-op personality has now returned :-)

After

And here's the after image ... there's clearly a lot of metalwork in Amy's body now, but you simply can't tell without an x-ray.

Looking from the outside her back is now perfectly straight, and Amy has no sense that there's a couple of titanium rods, various screws and mysterious spikey things attached to her spine. It's a huge testament to modern medicine, materials, the skills of the surgeon, Brad's team, those who cared for her, and the resilience of children.

The other really surprising thing is that we measured her when she went in for the operation on Tuesday morning, and again when she came home today (Sunday) and she's grown 35 mm (I think that's around 1.5 inches) in 5 days as a result of the operation. Amazing!

Before

Here's the actual "before" x-ray picture of Amy's spine.

I'm still staggered by just how curved her spine was before the operation, and still can't believe we never noticed it before we did, or that it progressed so very quickly.

There's a really simple test you can do to spot this (just get your son/daughter to touch their toes with a bare back and a curve of this size is pretty obvious).

Amy's Out ... !

Sunday. Five days after the operation and Amy was released from hospital today! She still gets tired after exercise, of course, and is dependent upon some pretty strong pain killers, which also make her drowsy, but she continues to make really good progress and is increasingly upbeat.

I'm sure we left hospital with more stuff than we bought (helium balloons, chocolate, sweets, etc.) but we packed it all into the car, surrounded Amy with pillows in the front seat, and I gingerly drove her home, carefully negotiating the myriad of speed humps and potholes in the roads around the hospital. It took forever.

Operation Plus 96 Hrs - Getting Back to Normal

Today has been a good day. I had a lovely email this weekend (thanks, Heidi :-) explaining how her own daughter hadn't really come around until 4 days after the op. Up until this point I was secretly worried. Most of the time I'd personally spent with Amy since the operation she seemed more down than up, just not her usual happy self. All understandable, of course. However, this afternoon she seems to have really turned a corner and her old personality is beginning to shine through.

I was walking her up and down the main ward corridor and she was positively scurrying along, actually asking if she could go for a walk every half hour or so, seemingly relishing her re-found mobility. The ward corridor just didn't seem long enough. We'd just done another couple of circuits and one of the physiotherapists, noticing how mobile she was, called out, "Amy!". She asked Amy if she was up for trying stairs, and Amy just took it all in her stride, going up and down like nothing was wrong at all.

I left the hospital a lot happier this afternoon. Amy is still somewhat dependent upon her mum for help with washing, etc., so I wasn't due to stay with her at the hospital overnight. Later that evening, however, Amy called me and asked if I'd like to stay the night and give her mum a break, which I did.

Brad Williamson and the physiotherapist are now both happy for her to go home tomorrow, which is just the best news. The change in Amy in the last 24 hours has been incredible. We've had a really nice relaxed evening, watching "Duplicity" (Julia Roberts, Clive Owen, impossible plot) on DVD.

Wide Awake!

Amy slept from 11 pm to 3 am this morning, whereupon she was wide awake, chatting happily away to her mum. She then slept from 7 am to 7.30 am. She's had the dressing changed on the main operation site as well today, and Tracey tells me the stitches look brilliant. She seems much better this morning and the staff are taking a harder line with her, insisting Amy gets out of bed and sits in the chair to eat.

Operation Plus 72 Hrs - Big Steps Forward

Day 3 and Amy's progressed to walking to the end of the corridor, a distance of around 10 meters, and back, of course, which is absolutely brilliant. She's also able to move around the bed a lot easier, get in and out, and has started to sleep on her side which seems a lot more comfortable for her.

The bad news is she's still on O2 from time to time and the staff continue to worry about her chest. Amy's still sleeping an awful lot, although I suspect this is just a normal part of the recovery process, and all that walking around must take it out of her as well.

Amy's room is steadily filling with helium "get well soon" balloons (Lucy and I will have fun inhaling those when she leaves), cards and chocolate. Brad Williamson's been in and is talking about discharging her at some point soon, potentially as soon as the weekend. It's currently Friday, so a weekend discharge feels pretty quick. If I'm being honest, both Tracey and I feel happy that at the moment we have the safety net of the hospital staff there. We'll see how her chesty cough progresses over the next few days and make a decision then.

Operation Plus 48 Hrs

It was eerily quiet last night at the hospital and I didn't get a lot of sleep. I was on the 1st Floor of the hospital (the same as Amy), but she's in a completely different wing, a walk and a couple of lift rides (up and down) away. I showered like a zombie, had vending machine coffee to wake me up and went off to see her in HDU around 7.45 am.

I bumped into one of the HDU nurses in the corridor going home after her night shift. She said Amy had been turned over to lay on her side in the night, which was good, and had had a comfortable night. When I arrived at HDU Amy was asleep but woke up pretty quickly and gave me the biggest smile. She said she was OK but didn't sleep that well.

The HDU staff said they were going to take all her drains, probes, etc. off this morning (which means no more epidural or morphine) and move Amy up to her room on the main ward, which is great news. The staff in HDU are superb, but it's obviously a very clinical and efficient environment and it will be nice when she's back in her own room and we can be more like a family again. Breakfast arrived and Amy had some toast which was good.

I called Tracey and assured her everything was OK. She'd slept really well and was off for physiotherapy herself later (she'd had a couple of operations on her shoulder a few weeks back and was only just beginning to recover properly, herself). She'll be in just after lunch.

Brad Williamson came in to say hello and said Amy was "tough". Then they started removing the various drains, etc. from Amy. She never made a sound, bless her. She was so brave! I saw her back for the first time since the operation and it just looked perfectly straight, no sign of her rib hump, with a thin dressing covering her main operation site. When they had finished she just looked so different without all those wires and tubes all over her. Within a hour she was back in her room, although I sensed she was very tired and not as chipper as the previous afternoon. This is normal at this stage, apparently.

The postman came and delivered a series of "Get Well Soon" cards, which we opened, and her Grandma and Granddad arrived to visit just before lunch. It was obvious within a couple of minutes that Amy's granddad was handling this about as well as I was (i.e. badly, but stiff upper lip and all that) whereas Tracey's mum just took it all in her stride.

Tracey turned up around 2.30 pm (Amy was well pleased) with more presents and card from her friends, and the correct teddy (apparently I'd bought the wrong one).

It was a big day for physiotherapy today. They got Amy stood up twice and made her take a few steps - a big milestone! I know it's all part of the recovery process and for Amy's own good, but I just wish they'd let her sleep for a couple of hours. She'd not eaten much all day and I think the second episode was just too much.

They also started getting worried about a chesty cough Amy seems to have developed, so the focus has been on getting her sat up and doing a series of breathing exercises every 15 minutes. Mr Williamson popped back in and gave Amy (and I suspect the nursing staff) strict instructions to focus on her breathing. She's also on a nebulizer (breathing moisturised O2) from time to time to try and loosen her chest. If you have a dodgy back and develop a chest infection, the need to cough can obviously be quite painful. Now the morphine and epidural have been discontinued Amy's pain is being controlled by drugs administered orally, which I suspect are not quite as effective, plus Amy's no longer got the ability to press a button to get a "hit" of on-demand pain relief.

Operation Plus 24 Hrs

I picked Lucy up from her sleepover this morning, came back to the house (I really should be more organised), threw some stuff in an overnight bag (including the teddy Amy had asked for) and left again, all within the space of about 20 mins. We had a quick lunch at Loch Fynne (I bet I've spelt that wrong) in Knutsford, bought Amy a "Get Well Soon" helium balloon and set off for the hospital.

I was a bit worried about Lucy seeing her elder sister all wired up in HDU but she took it really well. Amy was actually pretty chipper and upbeat, especially since it's only been 24 hrs since the operation. She was actually quite jolly. Clearly still very very tired, but on good form :-)

Physiotherapy had already been in and got her stood up already. They don't mess about.

Tracey was absolutely shattered having spent the night in the hospital on a camp bed. She took Lucy home - my turn to stay with Amy tonight. Being alone with your daughter in HDU isn't easy. You do what you can, but at the end of the day this is limited to administering drinks through a straw and talking when Amy was up to it. You feel pretty useless. Amy drifted in and out of sleep constantly, looking so small surrounded by all that medical equipment.

Amy fell asleep at 7 pm and although she woke briefly every hour or so, was still asleep by 10 pm so I too went to bed. The hospital have been great and sorted me out with a room on an empty ward. I was tucked up in bed by 1030 drinking hot chocolate (I'm a party animal).

The Morning After

I just spoke to Tracey who's been at the hospital all night. Amy's much better this morning. Most of the swelling in her face has gone down and the full oxygen mast has gone, replaced with small nasal tubes. She's still very drowsy, slipping in and out of sleep all the time. They're going to try and get her to eat some toast for breakfast (she was obviously nil-by-mouth since 8 am yesterday so hasn't eaten for 24 hours). They'll also turn her over so they can change dressings, etc. She's due to spend another couple of days in HDU before being released back to her room. I'm really looking forward to seeing her again.

Can't Sleep

It's 4 am, the morning after Amy's operation, and I can't sleep. I keep thinking about Amy in HDU. Her face was quite swollen (the result of fluid retention as a result of being face down for four hours during the operation) and she had lines and wires everywhere. A drip, another one to monitor her blood pressure, one for pain relief (which she could self administer to a point by clicking a button), an epidural, a clip on her ear to measure the oxygen in her blood (this glowed red for some reason), an oxygen mask, wires to monitor her heartbeat, something to monitor her breathing (I think to detect apnea), the usual "ports" in the back of her hand to enable the staff to administer drugs, a drain for the operation site itself, a catheter, lines supplying warm water to a "Bearhugger" - some sort of jacket to keep her warm - the list goes on.

She's clearly in really good hands. Jane the HDU nurse was continually monitoring things and reassuring us every time a machine made an unusual beep. In the hour or so I was with her she made a dramatic recovery, from being initially sick and unable to speak to remembering all the banter the anaesthetists were having with her just before she was put under, having a little joke, and asking for her favourite teddy to be bought in from home. She also asked if she could go and watch "House" which a patient in a side room was watching. It's one of her favourite TV programmes about an acerbic attending physician in the US.

I left around 2130, called grandparents to update them and drove home. Lucy phoned around 11pm from her sleepover to see how her sister was (she's sweet). We'll go for lunch later, then I'll take her in to see Amy for a bit. It's my turn to stay over at the hospital tonight.

Operation Done

Just got in from the hospital. A very quick post to say Amy has now had her operation to fix her curve and seems to be doing OK. Mr Williamson said everything went absolutely to plan. She's in the high dependency unit (HDU) wired up to all sorts of stuff, is slowly coming round and becoming more chatty by the hour. Too drained to blog any more. Just glad that bit's over. Off to try and sleep. More posts later.