In Bristol Children’s Hospital the cleaning staff always knocked and asked our permission before entering Leah’s room to clean it. If we indicated that it wasn’t a good time they would go away and came back later. If Leah and I were snuggled up together in her hospital bed watching a DVD then the nursing staff often apologized for intruding. Shortly after Leah was admitted to the Bone Marrow Transplant Unit there I was quite taken aback when our very senior haematology consultant even apologized for disturbing us when he came to see Leah!
However once Leah became an adult (i.e. over 16) and was in the adult ICU in Belfast City Hospital, there were times when I felt like the intruder. Now I was the person on the outside knocking and asking permission to enter. I hadn’t changed but the environment had changed, policies and procedures had changed, and my heart was breaking.
In Bristol when Leah was ill I provided all her personal care, showered her, dressed her, changed her bed linen etc. The nurses administered her medication, worked the pumps, nasogastric feeds etc. It never occurred to me that it would be so different when we returned to adult services in N.I..
On Thursday morning 2nd January I could see that Leah’s oxygen levels were dropping and that she was finding it increasingly difficult to breathe. I knew that putting her on a ventilator was the likely next step. I was asked to leave the ICU for doctor’s rounds so I went and had breakfast in the hospital cafe – I liked their warm and frothy cinnamon milk.
Shortly after my return to Leah’s side-room the consultant on duty called me into a separate room. He explained that Leah was critically ill and that they would have to put her on a ventilator to help her breathe. He said that this would entail giving her a general anesthetic & keeping her fully sedated for at least the first 24hrs or maybe more.
He said that because she was so ill she might not even survive the process of being put on the ventilator. He also said that she needed some essential blood products before being ventilated in order to reduce the risk of death and these weren’t available yet so it would be 1-2 hrs before they could go ahead with the procedure. I knew that this unfortunate delay could further increase the threat to her life.
I asked the doctor if I could stay and hold her hand until the general anaesthetic had been administered and she had gone to sleep. He replied that this wasn’t possible as he had equipment to set up and I would be in his way. He continued talking, explaining other aspects of her situation, but I couldn’t concentrate. My stomach was churning. My child was possibly going to die. He was going to put her to sleep and I couldn’t be there to provide reassurance and comfort until the anaesthetic took effect. The last face my child would see would be his face and not mine.
I wanted back in to see Leah, knowing that every moment was precious, but right now my breakfast was threatening to make a reappearance and there was no relative’s toilet in ICU. I excused myself and made my way through the convoluted set of corridors until I reached the public toilets in the hospital foyer.
Thankfully the disabled toilets were available – I didn’t want an audience. I locked the door and gripped the sink as the walls spun round me. I closed my eyes and tried to slow my breathing. This was awful – just awful.
About 20min later I had finally regained my composure and could return to my daughter. I sat and read to her and prayed with her and we listened to her favourite Christian music on her iPad. Due to some difficulty in sourcing the very specific blood products Leah needed, it was a couple of hours before the doctor came and put us out of the room. During this time of waiting, Leah’s oxygen levels continued dropping and the machine that was monitoring her stats was frequently alarming. I wondered at one stage if Leah was going to live long enough to even go on the ventilator.
The Bible says in Ecclesiastes 3:2 “There is a time to be born and a time to die” and thankfully this was not Leah’s time to die.
On Monday 13th January Leah’s oxygen levels were again dropping and she was again finding breathing difficult although this time round she was already on a ventilator and she was awake.
Thankfully a different consultant was on duty – one who didn’t mind me being with my child & giving her comfort while he worked through the crisis. He tried many different approaches to help her with her breathing difficulties until the only option left was to fully anaesthetise her for the last time. While all of this was happening I comforted her by holding her hand and stroking her head. The last face that Leah saw before going to sleep was mine and it was a face so filled with love for my daughter.
Leah remained fully anaesthetised until she was transferred to the N.I. Children’s Hospice on Thursday 16th January to spend her final moments in peace and dignity surrounded by the love of our large extended family and a few very close friends.
It’s so hard to explain how in the midst of the terrible sadness of my daughter’s death I still feel an incredible sense of God’s perfect timing.
Another song that Leah and I loved comes to mind, it’s “Sovereign Over Us” by Aaron Keys
“There is strength within the sorrow, There is beauty in our tears
You meet us in our mourning, With a love that casts out fear”