On Saturday, November 28th, 2015 we arrived home from Ste.Justine hospital with Kate. Kate’s pain was no longer under control and we did not have a good plan to manage it. That day was overwhelming while people caught up with the situation, and we were finally set up to support Kate the way she needed to be. It was adrenaline and pure love that kept us going after days, weeks, months of little to no sleep. We were emotionally and physically fried, fueled by desperation and an underlying sense of panic as we navigated something no one could imagine in their worst nightmare.
Saturday night was not a restful sleep. Kate did not wake. She seemed comfortable. I went to my own bed, as did Jack. Brian slept on the floor beside Kate. At midnight he came and got me. “Kate is making a funny sound”, he said.
I got up and went to her, and indeed she was making a strange sound. A sort of chesty gurgling, like she needed a big wet cough. I checked her oxygen saturation and heart rate, and all was well. We now had an oxygen compressor in the house and did not have to rely on tanks. I also checked her IV fluids that were continuing to run. I had not paid much attention to the rate, and now saw that they were at 80ml/hr. That was an unusually high rate for Kate, who was typically on ‘maintenance fluids’ throughout her life. A range of 20-40ml/hr was what I had been accustomed to. I made a mental note to ask Dr. Splinter when he came in the morning. I remembered that Dr. Duval had emphasized that rest, pain management and hydration was the way to treat an acute pancreatitis. I thought of turning down the fluid rate myself, as I was very familiar with programming the pump, but I chose to wait.
I thought of sending Brian to our room, but I knew he wouldn’t go. He looked exhausted. He was exhausted. He had been sleeping on the floor in Kate’s room, with his arm reaching up to her bed so he could hold her hand to let her know he was there. At some point in the night, Jack had joined him on the mattress next to Kate’s bed. I can’t imagine how he slept like that. He probably didn’t.
I climbed into Kate’s single bed in the space between her and the wall. I didn’t want to disturb her, but tried to gently move her over to create some space. We did a lot of co-sleeping with Jack, but never with Kate. She always wanted her own space. I decided this is where I would stay. I slept, which really was just resting my eyes and dozing off. I mostly listened. The gurgling became more pronounced, and at 5 a.m. I decided I needed to call Dr. Splinter. I described what was happening and he asked me to hold the phone to Kate. He said he would be right over.
I wasn’t ready for the incredible intimacy of those moments between Dr.Splinter, Kate and I. There in my pyjamas, my glasses on (I wear contacts typically), no makeup, hair tousled, sleeping with my daughter in her bedroom in our home. You would think I would not give it a second thought considering all of the years I had been admitted into hospital with Kate. (Yes, when you admit the child, the parent is admitted to). I had walked in the halls in my pyjamas to go to the bathroom, or upstairs for a late night tea in the kitchen. I had a nurse walk in on me more than once while I tried to quickly get dressed in Kate’s room. I stumbled for my glasses and to gather myself from a sleep stupor as residents came in to our room in the early morning. Dr. Splinter and I had known each other for years, but I still felt a little exposed as he stepped over my husband and son on the floor next to Kate. He thought nothing of it. His incredible years of experience, our long term relationship, and his astounding ability to do this part of his job so well and with so much directness put me at ease.
He listened to Kate’s chest and told me she had fluid overload. He turned off the IV fluids. “She doesn’t need this”, he said. Her body was not using the fluids we were giving her efficiently and the wet sound in her chest was the result. (I learned later that this was also a first sign of her body shutting down.). He introduced a medication to reduce her secretions. We came to use it a lot through her subQ site over the next 24 hours.
I told Dr.Splinter that Kate had not been getting her post bone marrow transplant medications, including her heart medications. I had been told to keep to our schedule as much as we could, but the night before Kate was not conscious enough to take them orally. Dr.Splinter reassured me that he was not concerned. I knew on some level that this was important, but I didn’t process this information. I filed it aside as something to worry about later, when Kate was feeling better and more alert and we could get back on track with her medications. Although we had brought Kate home because her team felt nothing further could be done, I wasn’t understanding yet that she would likely die and that she was declining quickly.
Dr.Splinter was back and forth a couple of times that day. It was a busy, confusing, overwhelming day. It was a day of enormous change.
We had let friends and family know what was happening, and that we were home. On Friday I had called my brother to let him know we were taking Kate home. He said he could fly to Ottawa early next week. “I don’t think she’ll be here Michael”, I told him. We had also called Brian’s sister in Newfoundland, she was on her way to Ottawa with her husband and daughter. His other two sisters were making arrangements. My parents were here. They had moved to Ottawa temporarily to support us during the bone marrow transplant. They had stayed after all of the complications had occurred and we found ourselves back in Montreal. I did not speak to them much over those few days. I could not even look at them as I could not bring myself to see their grief on top of my own. It was all I could do to keep myself together. I feared the grief of others, especially my parents. It would be too much to bear, and I would fall apart.
My tribe of friends from Rogers House and CHEO were waiting to take action. A couple of them came over and offered advice and assistance about oxygen lines, positioning Kate so she would be more comfortable by propping up the head of her mattress, giving advice about pain management, fluid overload etc., and taking on the massive job of cleaning out my fridge which had been filled beyond max with food from concerned neighbours. Other close members of our tribe kept in touch by text, and shared advice, and words of support. I poured out my heart and deepest fears. They responded with compassion.
These were knowledgeable, smart moms who also had sick children, or who had lost their child after a medically complex life. I know how lucky I am to have met them through the CHEO Complex Care Program and Roger Neilson House, and to have had their support and love. Sadly, they were also attending to other friends of ours who had lost their son several days earlier. Not everyone has that sort of ‘tribe’ at such an incredibly difficult time.
Sunita and Stephanie continued to manage medications and tried to set up a schedule to keep track of what was being given, by whom, and when. I relied on them both heavily. I did not want to have nurses in our home. I felt an immense need to nurse Kate myself, and with the support of Sunita and Stephanie, I felt I could do that. Between the two of them, one of them was always at the house.
At one point there were a few nurses downstairs, all sent from various agencies via CCAC. There was much discussion about who should be there, what their roles were, and who was best suited to support our family and care for Kate. A nurse we had worked with all fall, finally put her foot down, insisting she knew our family best (she did) and that she would look after us. The other nurses left. I was grateful I didn’t have to intercede and grateful for the quiet presence of this nurse who knew us, and played an important background role of organizing medications and drawing up syringes, and monitoring Kate.
What I remember most from that Sunday was confusion. I had convinced myself that this possibly wasn’t the end. No one had said it was. Maybe it wasn’t. I asked about bloodwork, maybe we need to adjust her fluids? When Kate opened her eyes, unfocussed and rolling, I thought it was a sign of her regaining consciousness. She was squeezing the hands of people who were sitting with her, I thought in response or recognition that they were there. I reminded myself that we were managing her pain, she was well hydrated and she was resting, all the things we were supposed to do to manage the pancreatitis crisis. We just had to wait and see and give her time. We could have weeks, maybe months if we got her stable. Isn’t that what we had talked about less than 48 hours before?
I blame panic and and inability to process what was happening, for my confusion about what was happening to Kate. It was the denial of grief, and I was exhausted. Beyond exhausted. I had not slept in 48hours. I had had little sleep in the past 9 months, while living in 24/7 isolation with Kate. Compounded by 8 years of caregiving that never involved a full night sleep.
I asked my questions and made my case to Dr. Splinter when he arrived in the afternoon to check on Kate. And he reacted exactly in the way I needed him to. Firmly and directly. Kate did not need bloodwork. We are managing her exactly as she needs. She is declining faster that he had anticipated. We are doing all the right things for her. “You are doing a good job”, he said to me.
We set up a chair next to Kate’s bed. If I was not laying in bed with her, someone was always with her to hold her hand. Touch was important. We respected Kate’s space and did not put her cochlear implants back on. We also tried not to move her or pick her up. As much as I wanted to hold her, I did not want her to have any pain.
Jack took charge of monitoring her vitals. He wanted to know exactly her heart rate and oxygen saturation. If they changed or were elevated, he would let us know. It was a good indication if we need to increase Kate’s oxygen or morphine. When she developed a fever, Jack got cold face cloths to cool her off. I let him help me manage her PICC. He was better than most at ensuring infection control was respected and knew what materials to hand to me and when. As much as anyone, Jack was involved in nursing her. He was her brother. He had always been there for her, and that wasn’t going to change now. It was also very natural for him to be involved and helping me. He always had. I am so proud of him.
I was scared to sleep that night, Sunday, November 29th. I was grateful the day was over. I was grateful for the stillness and the quiet of just us in the house. Brian and Jack slept on the mattress on the floor again, and I climbed in with Kate. She was naked, having soaked through her pyjamas and her body heating up. We thought it would keep her more comfortable not to fuss with putting another set on pyjamas on. I stroked her chest, her arms, her face. She had changed so much physically. Her face was distorted from steroids, her hair was growing back a light brown, her body was puffy, and her hands were exceptionally warm.
I talked to her that night. I told her it was ok, that I understood what was happening now. I told her how amazing she was. How brave, and beautiful, and smart. I thanked her for being my daughter and for all she had taught me. I told her I was sorry. I was so so sorry for all of it, all of this, everything she had had to endure. I told her that I would always be with her, that I would NEVER leave her. I would find a way. And no sooner had those words left my thoughts that I felt an incredible intense pain in my chest. A ripping sensation, a tearing, a shredding. I couldn’t breathe. I didn’t understand. And then Kate showed me, it was her. She had heard my words, she was taking a piece of my heart for herself. So that I would always be with her. I smiled at her and I cried. “Oh smart girl Kate-O”, I said. “You figured out how to keep us together”. “I don’t want you to go Kate, but you don’t need to stay for me. I’ll go with you.”
This is what I can remember. The raw truth and love and honesty that spilled in whispers from my lips to her ear. She couldn’t hear me, but I held her hand to my mouth so she could feel my words. I whispered to her so we wouldn’t wake the boys. Mother and daughter secrets. Kate-O and mama. I felt calmer after. A strange aura of calm and understanding between she and I. I also felt gratitude. Grateful we were all together and at home. Grateful she would not suffer with strangers at her side. I didn’t want her to die, but if she had to, this is the death I wanted for her.