It was a wonderful service that truly did Stacey and her wonderful family proud. Her family did Stacey proud too. Grief-stricken yet making the day shine for their Princess.
It was a long day. Leaving home at 8 am and arriving back at 11.30 pm. Yet every moment was worth it to be able to share that with those who loved Stacey.
This morning after an Eve filled night, I had to be up and ready for the school run and to face a multidisciplinary meeting to discuss and plan for the childrens needs. To say I hadn't prepared was an understatement. My thoughts had been taken up with other things. So, scribbled notes on the back of an envelope served as my memory jogger and I set off.
Care at home had taken some hurried planning as Rosie had been sent home from school on Monday, whilst we were half way down South with. "A tummy bug. "
I knew it wasn't, Rosie had had the tummy bug just after Christmas and what we were now seeing was the knock on effect of poor gastric emptying and severe gastric dysmotility. Rosie arrived home full of mischief and kept her carers, who had kindly rallied together and organised care for her, fully occupied until our return.
School had said they couldn't accept her back for 48 hours. So much as I wanted to say tough she's coming, I decided discretion was the better part of valour and decided to discuss it with Nurses present st the meeting. Fully minuted they could not claim they didn't know, later!
I had taken the opportunity at 2 am between visits to Eves bedside, to email the gastroenterologist. With excellent timing his reply came through just as the meeting was being called to order!!
He agreed with my perspective and gave us a proposed management plan.
Feeding Rosie more slowly/continuously is not going to be an easy answer. But the nurses present were all in agreement that slowing her bolus down to go in over half an hour instead of 20 minutes and using ondansetron to control sickness could be a good starting point.
The discussions started then with Joshua through Christina to Rosie and ending with Eve. The what will happen after school for Rosie was the difficult question. It involved some heated debate and many tears. At one point I left the room to try to gain some control. The bottom line being that without adequate support for Rosie, we will not be able tocontinue to care for her at home.
The discussions were not going to resolve within the time frame of this meeting and so we moved on. Talk of respite, an aim to have some time for David and I. It's our 30th anniversary in May. The last time we took time out was our 25th anniversary. When we booked a hotel in York. Taking Eve with us but the rest were cared for between hospice and a friend. A wonderful friend then met us in York and took Eve off so we could have a few hours together.
It would be nice to have just a couple of nights together. I wonder if all the good intentions will come together by May. Certainly everyone wanted to make it work.
So we eventually rounded things up. I really am not sure what was achieved today. But I think some important notes have been made.
At the beginning of the meeting one of the Nurses had said his colleague, our palliative care nurse had sent apologies as she had been with a family all night and their child had died this morning. I instinctively knew who this child was, a young man we knew and loved. A child with Leighs Encephalopathy, like Eve. A little boy much loved by his Mum and Dad, brothers and sisters and all who knew him.
Another family with a child size hole in their hearts.
What kind of meeting went on in heaven. I am sure there were many young ones there to show each other round. What a chorus of beautiful voices blending together in praise.
I know which meeting I'd rather be at!
Tina Hillier
Mum to 5 great kids
I do not know what the future holds. But I'm glad I know who holds the future.
1 comment:
A hard day for you Tina, hope they come up with some serious support for Rosie and also for May. xx
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