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. 


Caz said...

That's beautiful Tia, the support you received and the way you describe how much it has meant. And the hospital smell thing struck such a chord too.

PMD Peter said...

Well done to your 'team' and your organisational skills. Seems that everything has fallen into place in unfortunate circumstances. Hope you can get the young lady home and back to school with the same smoothness as has happened up to now.
I just wish our mob over here would do the same. 9 months they have had to arrange the transition from Children's Services to Adult services and we are now 3 weeks past 18 and nothing. Tops have been blown and rants had and maybe a little movement today.

Anonymous said...

What a blessing to have some many willing and able to help you care for your special girls. It is great to see how the Lord works things out for us in our need. Debra

Anonymous said...

I only just found out from your blog what's been happening. What a horrible thing to happen but I'm so glad you've been getting help from everyone. Big kisses and cuddles and hope for a speedy healing. xxx Y


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