Thursday 2nd January 2014 was a very difficult day – Leah’s oxygen saturation levels had fallen lower than I had ever seen them go before. The doctor putting her on the ventilator had informed me that she may not survive the process of being ventilated. He had upset me further by telling me that I couldn’t hold my child’s hand until he administered the anaesthetic that would put her to sleep, as I would be in his way while he set up his equipment. He’d said that Leah might be fully anaesthetised for two or three days before they would gradually wake her up.
The ICU was managed by a team of consultant anaesthetists in rotation, so every day a different doctor was in charge – I met eight in total. They were all fantastic medically speaking and did everything humanly possible to save Leah’s life.
However, some of them had better ‘people skills’ than others. As the mother of a dying child I craved compassion and understanding, but sadly some of the doctors did not always show sensitivity in their dealings with me. Those who got it right were amazing and to them I will be forever grateful. Those who got it wrong I have now forgiven.
It was a hard road at times – the average age of the patients in ICU in BCH was 70 – the staff really weren’t used to dealing with a mother and child. Some of the doctors had children around Leah’s age. That seemed to have a positive effect on some doctors, making them more compassionate towards us, but for others it seemed to have a negative effect on their interactions with us.
In retrospect I can understand that different staff have different ways of dealing with difficult situations and the difficult emotions that these can produce. Since Leah died I have had conversations with some of the ICU staff, that have helped with my emotional healing.
At the time that Leah was ill and dying though I just felt incredibly vulnerable, sometimes it felt as if my heart was being dangled by a thread over a river of hungry crocodiles. When my favourite staff were on duty I felt protected and safe, but when it was staff that I wasn’t sure of, it felt very difficult.
Friday morning 3rd January I was sitting waiting to go into ICU when a very pleasant consultant I hadn’t met before came to speak to me. He said that Leah was coping well with the ventilator and that her oxygen saturation levels had improved. Not only that, but he said that Leah was now awake and that I could buy an ice- pop in the hospital shop for her to suck on.
I hated when Leah was fully anaesthetised and I loved when she was awake and could respond to me. While in ICU Leah communicated by typing on her iPad. This wasn’t quite as easy as it sounds though, because Leah’s medication affected her vision and made it blurry, so a lot of what Leah typed was unintelligible.
Leah tried to use the BSL (British Sign Language) finger alphabet to communicate with me, but it’s been ages since I’ve used BSL and the combination of emotional trauma and lack of sleep meant that my concentration was very poor and I just couldn’t remember what the different signs meant.
I asked the staff if they had some form of alternative/augmentative communication that Leah could use – they said that they used to have something but someone had dropped it and it was broken. So we just persevered with the iPad.
This is one of Leah’s more jumbled communications – the really jumbled ones I would have deleted at the time. Sometimes I used to feel really exhausted trying to decipher her communication and I would have been relieved when she fell asleep again for a while.
Other times Leah must have been less sedated and could write more clearly like here. Emma was the nurse looking after us that day. All of the nurses heard about Molly and Mikey and Charlie and were shown photos of them. They were two children and a teenager who had been in the transplant unit in Bristol at the same time as Leah and me and whose families we had become very close to.
Leah was on diuretics to dry out her body and remove fluid from her lungs. Having the ventilator tube in her mouth meant that she couldn’t close her mouth so her tongue became very dry. Leah told me that she didn’t mind being on a ventilator, the only thing that bothered her was the most awful thirst. She longed for a coke float or one of our joint favourite Marks & Spencer White Chocolate & Vanilla milkshakes.
Polly Pineapple ice pops were a major concession and this was apparently the first time that a ventilated patient in Belfast City Hospital had ever been allowed to suck an ice-pop. The only problem was that new permission for the ice-pop had to be sought every time the consultant on duty changed.
The consultant on duty usually changed around 8am & 5pm. One evening we waited so long for permission to be granted for Leah to have an ice-pop that the hospital shop was closed by the time that the necessary permission was granted.
Leah was told that she could have it first thing in the morning instead, but when the shop opened in the morning a different consultant was on duty so we had to wait for the necessary permission all over again. Once permission was finally granted I was away to the hospital shop like a hare to get the coveted ice pop before circumstances could possibly change again!
Never was an ice-pop so appreciated by anyone as those Polly Pineapple ice pops were appreciated by Leah. I used to hold the ice-pop for her. Sometimes Leah would doze off and wake up again and the ice-pop would have started melting and running down my fingers and my hands would get all sticky.
Sometimes when Leah was very tired I would let the ice pop melt in a paper cup. Then I would dip an oral hygiene sponge into the melted ice pop and let Leah suck the sponge – where there’s a will there’s a way!
Those were precious mother daughter moments – one of the little comforts that I could provide for her.