People who made us smile :)

People who made us smile :)

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During our long 14 weeks in Bristol there were various people who came to Leah’s single isolation room during the day and made her smile, especially on the amazing purpose built Adolescent Ward.
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There were so many lovely nurses and a ‘ward housekeeper’ who wore a yellow top – the colour of sunshine – she was a ray of sunshine in our lives. The staff who cleaned our room and served Leah’s meals always brightened up our day too.

Then there were the hospital teachers, they quickly became very special friends and we both looked forward to their daily visits.

The daily doctors rounds also brought us visits from lovely people who had become good friends and who took the time to listen and to reassure. Nothing was ever too much trouble.

Even though we longed to return to N.I. it was terribly hard to say goodbye to the other families and the staff when it was time to leave Bristol, we had formed so many close relationships.

There was perhaps one person more than any other who helped to break up the monotony and boredom of prolonged hospitalisation and isolation for Leah – Sue the Play Assistant. Sue came regularly to Leah’s room with a supply of craft materials for Leah and ideas on how to use them.

Leah was immune suppressed so everything had to be new and unused. We were there a long time so Sue needed lots of ideas for Leah. However, even when we were staying in “Sam’s House” and attending the hospital as a Day Patient, Sue continued to motivate Leah with a supply of suitable materials and ideas.
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The Wallace and Gromit Charity supports Bristol Children’s Hospital so there is a lot of Wallace and Gromit paraphernalia around the hospital which resulted in Leah and I both developing an immense affection for Gromit.

Sue provided a T-shirt and a template and Leah made herself a Gromit T-shirt – I’m sure Leah didn’t intend me to publish this photo of her sporting a face-mask but it’s the only one I have of her modelling her Gromit T-shirt. It was taken in our room in “Sam’s House” – it doesn’t look very tidy, does it?

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Leah decorated a little wooden bird house which she hung in the garden of “Sam’s House” before she left. Other craft items made by Leah were given as gifts to friends.

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Before we left Bristol Leah took to knitting scarves for her teddies with wool and needles provided by Sue.

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The NHS gets such bad press sometimes but Leah and I had so many positive experiences of the care she received both in Bristol and in Northern Ireland.

A long wait

A long wait

I arrived at ICU this morning at 9.50am & I wasn’t allowed in because of doctor’s rounds so I had to sit on the chairs in the corridor outside ICU for TWO HOURS wondering why they wouldn’t let me in.
Leah is in a side room & I have never before been kept outside for two hours because of doctors rounds.
When a relative of another patient arrived at 11.40 & asked how Leah was & I started crying & explained how frustrated I was about having to wait so long to see her.
He was so sweet & so caring, bless him. He’d been ringing all morning trying to find out how his very ill mother was doing and he couldn’t get any information so decided to come down instead.
My mother always said “shared experience makes us wondrous kin”.
Eventually at 11.50am I was allowed in to see my precious daughter.
When Leah is so ill and I am forcibly separated from her I feel a physical pain in my heart worse than anything I have ever before experienced.
I don’t want to eat or drink or do anything other than be with her.
Her oxygen requirements have increased significantly overnight so they have ordered a CT scan of her lungs for the start of the week which will hopefully give them more information than they get from her daily chest X-rays. I received this information from the nurse, who explained things very well.
The Doc who is on today is one who is unlikely to speak to me unless I insist on it.
I was told last week by a nurse that ” it’s not the norm in this unit for doctors to update relatives on a daily basis” and some days I just don’t have the energy to fight the system!
16 is the age of medical consent so legally Leah is now an adult – a small minority of staff make me feel like I’m “just a relative” – Leah’s “next of kin” – but I’m so much more than that – I’m Leah’s Mummy and she’s my child and my heart is breaking.
Leah’s liver & kidney function tests continue to head in the right direction. She’s having physiotherapy every day. She’s quite sedated and sleepy.