Sometimes when I look back over everything that I’ve written in this blog about the care that Leah and I received during her illness, I worry that I haven’t said enough about all of the good care that we experienced.
I worry especially that I haven’t said enough regarding the many excellent staff that looked after us in Belfast City Hospital.
There are a few possible reasons for this:
Our first impressions of the City Hospital were very negative and I think that this in some ways coloured my subsequent perceptions.
Secondly, I always struggled with what I considered to be the lack of age appropriate care in an age appropriate environment in Belfast, for our fifteen year old daughter.
Thirdly, my emotions were in tatters during the two and a half weeks that Leah was dying in ICU in the City Hospital and that obviously coloured the lens through which I interpreted everything.
When Leah was in Bristol Children’s Hospital and developed complications post transplant, she was prescribed pain relief in the form of tramadol and oramorph – a derivative of morphine. I was slightly alarmed at this and had visions of my daughter becoming a junkie!
The doctor reassured me however and explained that a bone marrow transplant had very severe effects on the body and initially all of her pain receptors would be in a state of heightened awareness, so that any pain that she experienced would feel quite severe and needed to be treated as such.
This actually made sense to me. I noticed that Leah had also become quite “sound sensitive” and couldn’t cope with any noise – even a dripping tap drove her crazy.
Well, whenever Leah was dying in ICU, I reflected back on this and compared it to how I was now feeling emotionally.
I felt as if all of my emotional pain receptors were in a state of heightened awareness.
During Leah’s final weeks, there were three things that I desperately wanted from the hospital staff:
1) To be allowed to remain at my ill daughter’s bedside continuously.
2) To be kept fully informed of her medical condition and their treatment decisions.
3) For any staff that came in contact with me to show kindness and an awareness of my needs as Leah’s Mummy.
When what was happening to me did not meet the above criteria, my emotional pain transmitters started firing and at times this felt unbearably painful.
However, when all of the above criteria were being met, I felt calmer and I found it much easier to cope.
I have to say, that most of the staff were very kind.
Those that got it right for us got it very right.
We had got off to a shaky start (at the time of diagnosis) with our haematology consultant, but Leah & I quickly put that behind us when we discovered how kind and caring he really was and is.
Our TYA (Teenage and Young Adult ) Cancer Nurse Specialist and our Clic Sargent Social Worker were there for us every step of the way and they were an enormous source of support to both of us. I don’t know how we would ever have managed without the two of them.
Most of the nurses were incredibly kind and caring, I wish that I could name them all and thank them individually.
There was two women who regularly cleaned the hospital during the night. They always had a smile and a kind word for me – they will never know how much this helped.
Sometimes, when a doctor wanted to talk to me, I was taken into the ICU office and two or three other members of staff piled in and watched while the doctor was talking to me. I detested this audience.
I was never told good news, so here I was, being told things about my daughter’s medical condition and life expectancy, that no parent ever wants to hear, struggling to maintain my dignity, while all of these pairs of eyes were fixed on me.
I would like to have been asked who I wanted to accompany me to meet with the doctor. I would most likely have chosen my TYA cancer nurse specialist, if she was available.
On another occasion, one of our favourite consultants was on duty, a young man who never failed to treat Leah and I with respect and compassion. When he wanted to speak to me, he “smuggled” me out of ICU and down a corridor and through another unit and into what looked like a store cupboard, far away from inquisitive eyes.
There, he gently, falteringly, explained to me that he really didn’t think that Leah was going to survive. Oh how I appreciated the respect that this doctor showed to me and his compassion. No, I didn’t want to hear what he was telling me, but it was so much easier to hear, when the information was delivered in a context that showed an understanding of my needs.
The day that Leah was being admitted to ICU it was the lovely consultant from Cork who assessed her, admitted her to ICU, then broke the news to me that my daughter was possibly going to die.
On Wednesday morning 15th January ’14 when we were in an end of life situation and Leah’s medical condition was rapidly deteriorating, the consultant from Cork, who always treated Leah and I with such dignity and respect, was mercifully once again on duty.
This incredibly compassionate man uttered the words that I will never forget “I’m off tomorrow morning – I will use this time to transfer your daughter to the N.I. Children’s Hospice.”
48hrs prior to this I had been told that under no circumstances could our daughter be transferred to the Children’s Hospice for her end of life care, as she was on a ventilator and too ill to be moved. I had found this very distressing as, if our daughter was going to die, we did not want her to die in critical care or even in an acute hospital setting.
When I was pregnant I was encouraged to write a “birth plan“. www.nhs.co.uk states “Use your birth plan as an opportunity to explain the things that really matter to you. However, remember to be flexible and recognise that things don’t always go to plan.”
Well, when Leah was dying I wanted a “death plan” – it was going to be my last act of love for my dying child. Of course, the “politically correct” term for this is an “end of life care plan”.
We have a large extended family who all needed the opportunity to say goodbye to Leah and she herself just loved big family get-togethers. No ICU anywhere could possibly have accommodated all of us. Least of all the ICU in Belfast City Hospital which does not even have a ‘relatives room‘ on site.
The Children’s Hospice was the only place that could accommodate our family’s needs and provide the type of end of life care that I wanted for Leah.
No, I didn’t want our daughter to die, of course I didn’t, but I thank God for all of the kindnesses that we experienced through it all, for the many people who touched our hearts along the way.
Leah was looked after by eight different consultants during her time in ICU, they all provided excellent medical care. They all cared about my daughter and they did everything humanly possible to save her life.
However, for me it was very special that the same kind, caring consultant from Cork (my hometown) who took Leah into ICU on the 27th December 2013, was the very same consultant who took her out of it and brought her to the N.I. Children’s Hospice on the 16th January 2014.
My Journey: 