Thursday 23 January 2014

Working together.

Saturday morning started out like any other, a slow and gentle beginning to the only day we have which is truly just ours, no carers or nurses and so no particular timetable, just freedom to take things at our own pace. 

And then a crunchy squishy mess where a solid bone should be, and our plans for the day came crumbling down around us. 

Abandoning Mog to a friend, we headed for hospital, where an X-ray confirmed our worst fears - despite no obvious injuries, no bruising and no marks (on a child who is usually covered in marks and bruising), a femur was fairly impressively snapped in half. 

Unexpected hospital stays are hard on any family. As a single Mum with more than one child, a single night away with one child takes some planning for the other. Depending which child I'm with, we have a network of family, friends and professionals who can help out with the other. 

Planned hospital stays are stressful enough. We can usually work them out, although this usually takes multiple phone calls to multiple agencies, and has involved friends both locally and nationally stepping in to fill the gaps. 

tLP's surgery in May had Miss Mog spending time in hospice and respite, together with a night at home with friends of mine. She has in the past spent nights with me at the Ronald McDonald House, and I have in the past spent nights at home, leaving a sobbing child on a hospital ward, tearing my heart in two as I leave one girl to keep the other safe. It all works out, but it is so hard. 

So, having seen the X-ray and realised that the crunchiness wasn't a stray screw or re-dislocated hip which could be left for a few days, wasn't a strange infection which could be treated non-invasively, wasn't an overreaction, and wasn't a simple easy-to-splint fracture, my mind started to melt at the thought of all the work which would need to be done to sort a safe place for Mog, still fairly fragile herself post tonsillectomy, or alternatively of the additional therapy tLP would be needing if I had to leave her in hospital and relegate Mog and myself to daytime visitors. 

In the minutes we had between discovering the break and waiting for the ambulance, I phoned our respite centre, a home run jointly by the local authority, the NHS, and Barnados. 

It was a Saturday, it is fairly soon after the Christmas Holidays, I was sure they would be full. They called me back in two minutes and said they would take Mog as soon as she could get there. 

My friend packed Mog's bag and sorted a handover. My Dad drove our bus. Mum met us at the big hospital, and I went with tLP in the ambulance. 

All sorted for Saturday night. 

On Sunday, our community children's nurse was working, as was our nursing respite coordinator. Our home carer got in touch when she turned up at home and realised we were gone, and she contacted her manager. 

I stayed with tLP. 

On Monday, emails started flying around the county, plans were put forwards, hospice, respite, respite nursing and Homecare all communicating with each other to come up with a plan to help us. 

And so it continued. 

Visits to hospital from the Homecare team; someone to spend a while with tLP so I could pop and see miss Mog in her lovely respite centre, based just beyond the hospital grounds. 

Support for the respite centre by staff from Homecare and by our respite nurses, to enable Mog to stay at the centre without needing to cancel respite for any other child. 

Additional training from the specialist nurse at the hospital for all the nurses at the respite centre in order to meet Mog's newest needs. 

Community nursing visits to our ward, to ensure everything was happening as it should, and that we knew what plans were being made. 

And I stayed with tLP. 

Within the hospital itself, continuity. A nurse accompanying tLP to theatre who has taken her down before, and taken miss Mog, and even supported Goldie through similar surgeries. Play specialists who know and understand tLP's fears. Doctors willing to listen to my concerns, and communicate with each other across different teams to make the perfect plan for tLP. 

And I stayed with tLP. 

Hospice making space for Miss Mog for the weekend, and then expanding that plan to include all of us when I realised just how tired I am at this point. 

And I stayed with tLP. 

Continuity on HDU; a four day/three night stay (unnecessarily, but no beds on the ward), and in that time just three named nurses for tLP. The same night nurse for all three shifts, and a nurse who knows tLP extremely well, so that after an uncomfortable night on a reclining chair, I was able to drive home to sleep for the following two nights, and be back before morning, knowing that tLP was not only safe, but also secure if she woke and I wasn't there. A few hours' sleep in my own bed being worth a dozen in a chair. 

The working together continues. OTs from hospital liaising with school, with home OTs and sending information through to the hospice before I'd even seen it myself. Plans for the next few weeks, an early return to school, and everyone working together to minimise the stress caused to both girls. 

2/3rds of us are at home tonight. Miss Mog has one more night in respite. Our home carers turned up this afternoon, and worked to turn tLP's bedroom from mostly storage room with a bed in the corner to fully accessible nursing bedroom with bed in the centre of the room, clutter relocated and rubbish binned. 

Tomorrow, we get to go to the hospice, and the girls will both be cared for, and I shall be able to sleep. And I will get to stay with both girls. And cuddle. And persuade Mog to start speaking to me again. And tLP will lose her hospital smell, and we will be together, and other people will bring us food and drinks and clean clothes. 

And then we will go home again, and start picking up the pieces again. Mog will be able to start going back to school, not having managed regular attendance since July. TLP will start back at school too, and I will start thinking about the new things we might need to start putting in place once this fracture has healed, to prevent another. 

But we will be together. 

And I cannot begin to tell you how much it has meant to know that we have such a huge team of supporters behind us. To know that there are safe places for both girls, to see that if I ever ended up ill myself (I don't plan on it), we have friends and family, volunteers and statutory providers who can and would take up the load. To see them all talking to each other, working together and then letting me know the plan, rather than waiting to hear my own suggestions and then picking the flaws. It has been huge. 

I shall sleep tonight. I am not indispensable. I love my girls, and I never ever want to be without them. But now I know that if things were to fall apart again, there are people who will catch us. This family has life rafts. 

Thank you, a huge thank you, to every one of you who has helped, whether that's been by giving me a five minute loo break or by sorting out the logistics of this week. You don't know what it's meant to me. 

Tuesday 21 January 2014

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. 

Sunday 19 January 2014

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. 


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. 

Tuesday 14 January 2014

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? 



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.

Thursday 9 January 2014

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. 


What we did on our holidays


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