We had been briefed by the neurosurgeon that it may require rehabilitation hospitalization once again, but we couldn't hear it. Having spent five weeks in rehab ending just 6 weeks' previous we couldn't bring ourselves to be open to it again. My husband who always errs on the side of caution looked at me as we stepped out of the office and said. "It's not going to happen." While I felt his sentiments as much or more than he did, I knew if my legs wouldn't move on their own there was nothing I could do but go back to rehab. I did, however, just nod in agreement with him as if it was a done deal. We wouldn't be going to rehab this time.
I had been walking daily to strengthen my legs. I knew that was the one thing that could help me through this so I continued to do that and Aqua exercises until the day before my surgery.
Before my surgeries I always have prayers, wishes, intentions and meditations. Mine were as always, to give my family strength and hope, my legs and bladder to function, and this time I dared to ask that I be able to rehab at home. I felt, we felt, it was what we all needed. It had already been an incredibly difficult year and without much family around the bulk of the visiting and upkeep is up to Barry and the girls. I knew they needed this break, so did I.
Having a spinal cord injury complicates the simplest of surgeries, but it certainly can reek havoc on a bigger one like this. I woke in recovery, quickly moved my toes. Yes! They moved. I felt terrible but my legs moved. I was satisfied enough to close my eyes and rest.
I was aware of the chaos of the recovery room from time to time, but continued to be grateful for what felt like an early success. It wasn't until the chaos surrounded me that I realized I wasn't out of the woods yet.
They had been monitoring me regularly, when there was a sudden and dramatic change in my heart rhythm. The recovery room Anesthesiologist was alerted and by my side diligently for some time afterward. He was shocked at how quickly it had turned for me as are most doctors when they see this rare spinal disorder "act up." I knew what was happening when I was asked that question again...."Mrs. Clout, how long have you had a heart condition?"
This time I was coherent enough to be able to say I don't have a heart condition, it is probably autonomic dysreflexia making my heart do weird things. I didn't dare go back to sleep. I am sure I dozed off but I was aware of everything around me because I had almost died from this once before; while I knew this doctor was on it, I felt he needed me as an assistant.
Next came an irregular EKG, then Enzymes were checked to rule out heart attack. It all looked okay, but I still wasn't into a natural rhythm. He had a call into to a cardiologist. What I remember of that time in the recovery room was this very excellent doctor staying nearby and checking and rechecking everything. We had conversations about this condition and he was comforting to me but obviously concerned. At one point after a second irregular EKg he asked what if anything he could do for me. I knew exactly what I needed from him.
Just three months previously, Barry and the girls were in the waiting room after my surgery when I had lost feeling in my legs. In the chaos, they hadn't been given any information and were left sitting wondering and worried. I asked that he get someone to speak to them. He assured me he would and it would be him. He wanted to be sure they we given clear information. The surgery itself was a success, but because of the ensuing situation he needed to keep me in recovery. He was great; not only did he speak to Barry, he brought him back into the recovery room for a quick minute with me. After more consultations and testing I was referred to the cardio team and moved to ICU.
This would be my third time in ICU at Toronto Western, twice in the last three months alone. Some of the staff recognized me and the family and it all felt oddly comforting. The nursing care on that unit is one on one and it is superb.
I remained in I.C.U for two days. Finally I was cleared by the cardio team and all looked like normal recovery again. The end of the second day I had said good night to family, gotten vitals, medications done and felt like I might actually sleep for a period of time. My excellent nurse had tucked me in, dimmed the lights and out I went.
She and I had developed a bit of a rapport so when she came in a couple of hours later to say they were moving me, I thought she was teasing me. I had gotten the go ahead to go to the Neuro floor the next day so I had expected to be moved the next day. With an extremely full hospital they actually will move people in the middle of the night if they need the I.C.U. bed. She felt horrible. I felt resigned. Without family nearby it was up to her to pack all of my things for me.
I arrived on 5a Neurosurgery at 1am. My room was being cleaned. I was put in the hallway to wait until it was ready. My ICU bubble burst and it was loud, chaotic and confusing. I was alone in the sea of people moving about me. It's hard to explain how badly you need friends or family to ground you at a time like this. It took quite a while to finally be hooked up to everything again; and for the lights to be turned out on what had started earlier that evening as a very good sleep.
It turned out I was in the room with a male when I awoke the next morning. That didn't last long as he was sent to surgery and another woman came back from surgery to fill the bed afterward.
The next few days had a number of ups and downs but there was a crisis point on Saturday in which the nurse called the neurosurgeons out of surgery to see me. She was extremely certain it was necessary, and was very decisive on such a bold move. I had lost some feeling in my legs and symptoms had changed for me. Once I was assessed they agreed she had made a bold but important move getting them to me. Now I was concerned. I was sent for a emergency MRI and once it was complete and they consulted, they put me on a dosage of steroids as the fluid was building around the spinal area causing loss of feeling. That nurse's name is Helene and I feel like I owe her a lot. She saved me so much that night by moving quickly and not being afraid to be bold.
Once the steroids started things did not get any worse thankfully. It did change things however on my Monday morning rounds with the neurosurgeons. Suddenly rehab was very much on the table with the possibility of an extended hospital stay. I felt sick. We had been so close, so very close to being able to just go home.
My doctor was compassionate and completely understood how we had our hearts set on rehab at home. He said he had settled on that too until the unpredictable weekend I had had. He had my best interest at heart and I knew he did.
With a hug and a serious look he said he would sleep on it, and let me know the next day, in the meantime let the steroid do it's job. As he left my room that day I felt disheartened. On an impulse I called out. "Dr.Fehlings, don't give up on me."
To my surprise, he stopped turned around and looked right at me. ."Never Maureen, I would never give up on you." He smiled and said he'd see me tomorrow.
It was a long questionable night. I was anxious with the news of possible rehab and I was uncomfortable and in pain. My bladder was irritated and I was going to the bathroom perhaps hourly. All this moving about was difficult. That was until about 4am, feeling a little fed up that I had to get out of bed again to go the bathroom I didn't notice immediately but the movement was easier. The walking was easier and I felt better. I noticed but it hadn't really sunk in.
I finally went to sleep and was awoken at 6.15am by the Neuro team. They did their assessment and it was stunning the difference between the day before and that morning. I was so excited I could hardly contain myself. I wanted the message to get directly to Dr. Fehlings immediately. I had the support of the team because I think they felt as I did. They agreed to text him so he'd have the information immediately.
Finally, I could see my way out. I knew it wasn't definite, but I also knew it was my chance to get home and continue to heal there. The next couple of hours worked to my advantage as my scores improved and a physical assessment from the Physio therapist went well.
Barry was so confident he packed the car and started cleaning up the room. We knew the ward was in high demand so we thought I would be discharged that day.
Dr.Fehlings arrived with his team to see for himself the changes that had occurred. He was significantly impressed. I would, however, have to spend another night at the hospital. He said he needed to feel certain I could get through night without incident to feel confident to discharge me. The other stipulation was I would be in the Toronto area for several days near the hospital in case of emergency. I was happy.
We were ecstatic leaving the hospital to the short drive to the Eaton Chelsea. I'm not really sure what I was expecting but it felt like a major victory. Barry had gone ahead, checked in and set up the room. It was an easy transition with the exception of the bumps and potholes.
Once settled into our completely accessible room it quickly became apparent that I had substituted a hospital room with nurses for a hospital room with family. We all kind of looked around at the room and all of us in it and realized it would be a long few days. Not one of us verbalized it. A change is as good as a rest..right?