Fixing things up

A lot of different doctors, a lot of different plans. Surgery yesterday, the smallest op possible, which means tLP now has long curved knitting needles pinning her femur in place from the knee up, and has retained her original hip hardware. 

These pins will need to come out at some point once the bone is healed. 

She has had a good night on hdu. I have not; for once the systems crashed, and for the first time ever (for us!) there was no parent bed free anywhere in the hospital. That said, the staff did their best to make me comfy with a reclining (sorta) chair, and tiredness did its best to overcome the overwhelming impression of being on an aeroplane. Coffee helps. 

Plan for now is, I assume, back to Tom's ward at some point today (depending on beds), check tLP can get into her chair safely and sit well-supported in it, and then hopefully home. 

What comes next; I'm not sure. She will need bone density scans and treatments - we will be adding endocrinology to our list of specialists, ironically just a few months since declining their services on a different subject for Miss Mog. 

She will need physio; we will need to figure out a way of getting her weight bearing again to try to build up bone strength that way. 

And, as Miss Mog gears up towards starting back at school next week, I'm thinking tLP may be heading for some time off until we can make sure her transfers etc. are safe (this is not because we think this injury happened at school or was caused by anyone in particular, simply that she will need some special handling, especially as the bone heals. The pins are bendy so not as supportive as a cast would be). Fun times ahead. 

No phones in hdu so local people, please don't worry about lack of updates. 

Tia 

If you're going to break a leg...

You probably ought to do it in style 

Current plan - traction, traction and more traction. She also appears to have an infection - very raised CRP levels and a sporadic temperature. So the question is, is that due to the break, or purely coincidental? 

Blood and urine being grown, dexa scan being arranged, and parts taking the lead until the cause is identified. Then trauma need to talk to orthopaedics; any surgery will mean removing the hardware from her previous surgery. Which may or may not be a good thing to do. 

So it isn't simple, we don't know how long we're going to be here, but we do know it isn't going to be a short visit. 

Tia. 

Cracking on.

So we woke up this morning and cracked on with our usual Saturday stuff. A slow start, a lazy potter, pleasure at Mog waking unexpectedly early, and then I lifted tLP from the loo to the bench and our day's plans shattered. 

One normally stiff and contracted leg now feeling crunchy like a bag of gravel. Hot, swollen, but as tLP has no feeling in her legs, no obvious pain. 

A call to grandparents for reassurance, and a call to very lovely friend who was able to look after miss Mog for the morning, and off we toddled to the local hospital for an x ray. Just to rule anything sinister out. 

Two hours later, and one very surprised nurse and equally surprised radiographer could see the very very evident and pretty nasty fracture which had snapped tLP's femur and which was now attempting to shorten her leg even more than it already was. 

No bruising, no marks, no falls or bumps and no reported accidents at home or school. 

So tLP got one of her long held wishes, and won a ride in an ambulance, together with flashing lights and siren. 

I'm not quite sure why there was such a rush to get her to hospital, since it then took another 8 hours to find her a bed, but still, she was happy. 

Meanwhile our awesome respite place agreed to take Mog (apologies to anyone who lost respite today), and I was fee to stay with tLP. 

A surgeon, a plan, and a consent form. Traction overnight, and then surgery in the morning. 

And then finally arrival on the ward, and a different surgeon, and a new plan. Two weeks in traction and no surgery. 

I'm not sure how feasible this revised plan is. I'm not sure it is based on tLP's needs. But 10.30pm not the time to argue it. I can't see two weeks flat on her back being a good thing for her chest, her pressure sores, or her emotional health; hospital being such a stressful environment for her. That said, if it is in her longer term interests, we will have to find a way to make it work. 

Meanwhile, it is late, she's asleep, and I think I should try to switch my mind away from all the how-did-it-happens and the what-will-we-dos, and into the I-may-not-have-sheets-but-I-have-a-flat-surface-and-a-pillow mode. 

Looking good

Here's a sight we haven't seen for a very long time - no face furniture at this time of day! Ok so she had a brief hour back on CPAP after lunch, but this is her second long break from it in one day. 

It's early days, but I think this tonsillectomy thing might just have helped! 

And, on an entirely unrelated note, this is the centre of my hone town. Have I said how much I love living here? 

Tia

De-tonsilled

A quick update since I forgot to on Friday; Mog is now tonsil free. Home on Friday - discharged straight from ICU which was mildly entertaining, as none of them quite knew how to do a discharge home "We don't do that from here!"

She is not sore, not infected, and managing four hours off CPAP, which is better than it was before she had surgery. It's not quite good enough yet though, so we're hoping this improves soon. Meanwhile, she's keeping us busy with a ridiculous volume of secretions; I'd quite like those to settle down too before too long.

Home now for two weeks and staying germ-free; please don't visit us if you are full of cold.

What we did when we weren't on holiday.

Miss Mog has been a bit poorly lately. 

When I say that, I mean, we've been getting to grips with using CPAP up to 24 hours a day, adding batteries and oxygen to our already overloaded wheelchair, battling to suction cottage cheesy secretions, adding new nebs and new meds and juggling life so she can enjoy it as much as possible. 

She's been mostly out of school since the middle of July. Which has meant fun at home, sleep at home, and getting used to having what can feel like unending relays of nursing staff in our house. I am profoundly thankful to have the nurses. But, from being mostly me during must of the day, I am now getting used to having other people, usually two at a time, sometimes four for an overlap, for what can feel like most of the day. It is a big adjustment. 

And within that, there have been appointments and investigations, and finally a decision to remove tonsils and hope it improves things. And then dates. And cancellations, and new dates, and more cancellations, and a child who is getting more tired and more unwell and less able to fight. And one tired mother making silly mistakes like attaching oxygen but forgetting to switch it on, or attempting to park the bus on top of a bollard (no children were harmed in either of these examples).  

Today is our fourth proposed date, and the second time we've made it as far as the hospital. And it seems 4th time is the charm; so far we have rumours of an ICU bed and a tentative op time of around 1pm. Shame Mog's been fasting for morning surgery, but if that's all we have to gripe about by the end of today, I'll be one very happy woman! 

She's one unhappy girl at the moment - I've got breakfast and she's having to make do with Ribena. 

Tia

What we did on our holidays