Caregiving, Disability

January 29, 2021

Isolation in Lockdown is Nothing New

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My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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As we enter week 5 of the second Covid lockdown, I realize that I’ve managed really well with this restricted way of living for the last 9 months. In fact, if I it were just my husband and I at home, I could almost embrace this way of living for a lot longer. We’re both extremely fortunate to have secure jobs that we can mostly do from home. Of course I miss seeing family, friends and colleagues, but all in all I am totally fine with this quarantine life. My source of stress at this time is managing my children. My nearly 17-year-old son is completely miserable because of the way school is being run this year and the periods of lockdown when he cannot see his friends have brought out an ugly side of him more than a few times. My 14-year-old daughter has done very well since March, but since school has moved fully online over the last 4 weeks, she is growing more and more anxious and sad. 

This morning I found myself wondering why exactly it is that I’m not going crazy after 10 months of distancing, masking up and basically doing not much of anything. I arrived at the conclusion that it is because I’ve been in training for this for the last 4 years. Compared to what my family experienced in 2017/18, this is really not that bad. 

If you have read any of my other posts here on Willowjak, you’ll know that 4 years ago my daughter Katie suffered a sudden brain hemorrhage and subsequent stroke. On that day, our lives essentially went into lockdown. Nothing was normal. During the first phase of her hospitalization she was in the pediatric ICU and in a coma. We knew we were lucky to live only 20 minutes from McMaster Children’s Hospital in Hamilton because this meant we could pop home when needed and that friends and family were close enough to visit, but normal life for us had ceased abruptly.  Both my husband and I stopped working and spent our lives at the hospital with Katie. Our son, who was almost 13 at the time, lived with relatives sometimes and when he was at home, only saw his dad briefly in the morning and at night. We stopped shopping, going to restaurants, going to the movies, going to the gym, seeing relatives for special occasions, having impromptu drinks with neighbours or coffee with friends.  Every moment of the day was dedicated to being with our daughter. We ate our meals in isolation in the ICU family lounge and the pace of our days slowed to a crawl as we passed the hours mostly talking to doctors, nurses and therapists. 

After the first month, Katie was beginning to regain consciousness and no longer needed a ventilator to breathe, so she was transferred to a different area of the hospital where she would recover more before starting intensive rehab at a different hospital. My husband went back to work and my life became more isolated. I passed the days comforting Katie who had entered the agitation phase of brain injury recovery. It was a guessing game as to how to distract her. I could not take her for a walk by myself because she had a tracheostomy, so we would have to wait until a respiratory therapist (RT) could accompany us. I would read to her, paint her nails, we’d watch something on my iPad, stretch her hands and feet or try otherwise to pass the time in a way that kept her content. During this time she was more alert but completely non-verbal. Our most reliable form of communication was using a set of Yes/No cards that she could gaze at to indicate choice. The highlight of our day was the evening from dad and brother Alex. Apart from that, chatting with the nurses and therapists was my social time. 

Two months after the bleed, Katie had progressed enough that she was ready to be transferred to Holland Bloorview Rehabilitation Hospital in Toronto. We felt fortunate that she was going there as it is the only fully pediatric rehab hospital in Canada, but also scared because this new phase in her care meant further isolation. The hospital was 70 km from our home. The visits from friends and family all but stopped and we saw my husband and son just once a week. The area of Bloorview that Katie went to was their Complex Continuing Care (CCC) ward. Katie still had the trach and therefore needed to be seen twice a day by RTs who only saw patients in the CCC. We were told that she would be transferred to the Brain Injury Rehabilitation Team (BIRT) once she no longer needed the trach. The CCC is the area of the hospital for children who need the most care. Some of these children were born with developmental delays and their families needed support to learn how to care for them at home while others acquired their disabilities like Katie. It was an incredibly lonely place to land for Katie and me. A lot of the children in the CCC had been living there for a long time–sometimes years–and as such their parents were not living at the hospital. When I took my meals in the family lounge I was almost always alone. I did meet one mother who came to visit her son every afternoon. She always had her adorable baby girl with her, so that helped to break the ice. I learned from our conversations that 5 years before at age 8 her son had caught a virus and had developed very high fevers. One evening when he seemed to be getting better, he started to have seizures and they didn’t stop for days and caused extensive brain damage. Tragically her son was left in a minimally conscious state – what we used to call a vegetative state—needing total care 24 hours a day. Her story terrified me. Had the doctors at McMaster been lying to us and there was no chance that Katie was going to recover beyond where she was at that point? I felt like I had been keeping it together pretty well up to that point, but now I was more scared than ever about Katie’s future. 

One aspect of the CCC that wasn’t explained to us before coming to Bloorview was that I wouldn’t be allowed to take Katie outside for walks. In fact, I wasn’t allowed to take her off the ward because of her trach. Respiratory therapists at Bloorview were in short supply and they did not have time to accompany patients and parents on walks. So we spent our days fully in her room. I talked to Katie, played music for her or read to her. She did not like television at all which we learned much later was because she had double vision. It was boring and stressful. Katie was afraid of everyone except me. She was supposed to have 2 or 3 types of therapy sessions per day, but she was too sick and would become tired so easily that it was more like 1 hour and the therapists came to her. The nurses on the ward were very nice, but you could tell they were accustomed to caring for children in a very different way than what we had experienced at McMaster. They spoke about Katie like she wasn’t there, or at least as if she couldn’t understand what they were saying, and this made her and me angry. After a day or two I explained to Katie that our only way out of that area and to an area of the hospital where we’d have more freedom was to get rid of the trach. I made it my mission to help Katie reach this goal. Katie was doing really well with the process when a new problem developed – vomiting. She had experienced problems with vomiting on and off since the beginning, but now as I observed her carefully I noticed a connection between her coughing, gagging on the trach and then vomiting. This happened at least once or twice a day, but some days it was happening multiple times a day. One day it was so severe that she couldn’t even keep down Pedialyte. We ended up having to go to Sick Kids emergency department overnight to have her rehydrated by IV. A few days later, it looked like we were going to have to repeat that process which I just couldn’t accept. I told Katie’s doctor at Bloorview that I just wanted to take her back to McMaster until the trach was out and the vomiting problem improved. This plan proved very successful and the vomiting stopped immediately! Without the trach, Katie was visibly more relaxed and happy and she started to move her head more. It became obvious how much its presence in her throat had been bothering her. 

After about 9 days back at McMaster, we were ready for Bloorview 2.0. This time we were admitted to the BIRT area where all of the patients have had a brain injury. Life on BIRT was much more lively and being able to take Katie for walks outside was amazing, but we were still very isolated. It felt like all the other children on BIRT were walking, talking and eating. When they weren’t in therapy sessions, they participated in recreational activities with other patients. This meant their parents could attend activities organized specifically for them like meditation classes or a walk to the local Starbucks. Katie was not well enough to go to the recreational activities, and she was still fully tube fed and was not talking. I went to her therapy sessions with her and when she wasn’t in therapy I was with her in her room. I got free time when I was lucky enough that a nurse could sit with Katie while I grabbed a coffee or shower. I think in some ways I felt more isolated than I had on the CCC because I could see other parents and their children almost enjoying their time at Bloorview. I sometimes wondered why they were even there in the first place. How could all of those children be recovering better than my own? A few times I tried to take Katie into the lounge where everyone ate their meals, but she found this very distressing. I’m not sure if it was the fact they she could not yet eat by mouth or if watching other people eat just annoyed her as this is a pet peeve of hers! 

I think one of the hardest times we spent at Bloorview was Easter which arrived the first weekend after we joined the BIRT ward. At that point Katie had been hospitalized for 100 days and I’m sure she missed home terribly. On the Thursday afternoon BIRT cleared out and became a virtual ghost town. Every patient except Katie and one other had gone home for a weekend visit. Unfortunately, Katie was not ready for that yet. She was taking several medications a day and was still tube fed. I had a lot to learn before I could manage caring for her without nurses to help us. Apart from a visit from dad and Alex, the weekend was profoundly boring and lonely.

At least the weather was finally starting to improve. It was mid-April so I tried to get her outside a few times a day. She also started to be able to tolerate longer therapy sessions which gave us hope. Also, she fell into a habit of sleeping for about an hour in the middle of the day which was my chance to eat in peace and even grab a coffee. It’s hard to explain how exciting having this small window of a break was for me. I even started to take walks in the beautiful Leaside neighbourhood that abuts the Bloorview property. One day I noticed for the first time that there was one patient on BIRT who seemed very similar to Katie in terms of his point in recovery. He was always in a wheelchair, was tube fed and I had not heard him speak. I talked to his mother and learned that her son had been diagnosed with a benign brain tumour about a month before Katie’s bleed. He had had surgery to remove it that was about 95% successful. Although their injuries had a different cause, they presented very similarly because the location of brain damage was identical. I finally had someone I could talk to and relate to and this woman and I became friends very quickly. Some of my favourite memories now from Bloorview are the times that we met in the family lounge after our kids were asleep so we could drink a few glasses of wine and laugh. The weight of loneliness and isolation had finally started to lift. 

Our lives since March 2020 have been very different from normal, but in truth our family has not regained a sense of normal since January 5, 2017. Last winter I actually finally felt like we were starting to establish normal lives again in many ways and Katie and I were set to take our first vacation in nearly 4 years on the March Break. There are days when the stress of us all existing under this one roof unable to go anywhere else is very difficult, but it’s nowhere close to the difficulty of 4 years ago. I often find myself thinking of parents who are living right now with a sick child in the hospital. The extra isolation that Covid-19 restrictions undoubtedly bring to that experience are hard for me to fathom. To go through that with only the possibility of one parent at a time with the child is unimaginable for me, and is yet another reason why I am coping with this time in my life despite its challenges. 

Allie G.

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Hi, I'm Stacey.
Welcome to the
Willowjak Blog 

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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