I’ve been in the hospital for almost three months because I’ve been diagnosed with Guillain Barré Syndrome.
The lower half of my body was paralyzed (my whole body could have been paralyzed, so I’m considered lucky). I had problems with my breathing and swallowing and what wasn’t paralyzed was numb and tingly and extremely weak. I also had an ongoing headache for the first month.
At the beginning of this journey I was miserable and hurting—mentally and physically—and dazed by just how surreal this really was.
After a few weeks of a little progress, things went downhill. My breathing was affected. At that point I was throwing up quite frequently and they thought I was aspirating some of the vomit. Then my oxygen levels went down to 30 per cent (they’re supposed to always be above 90 per cent) and the doctors thought it would be best if I went to the pediatric intensive care unit.
Once I got into the PICU everything was a blur. Shelly—my nurse—said she was giving me a nasal feeding tube right away. That crushed me. For a couple of weeks, doctors had said it was a possibility, but I never thought it would actually happen. So the feeding tube went in and the oxygen prongs were next. Other than the feeding tube, the oxygen prongs were the hardest to get used to. I didn’t think they were helping me. It felt like it was harder to breathe than before. I despised them.
The first three or four days in the PICU were the worst. I was throwing up what felt like every five seconds and it took hours to get my breath back. My throat felt incredibly raw because of the constant throwing up, the feeding tube and the continuous high-flowing oxygen going through it.
That was when I wanted to go home the most. I was getting an artery line, I couldn’t eat or drink on my own, I couldn’t breathe on my own, I couldn’t go to the bathroom on my own (I HATED the bedpan) and I couldn’t move my legs at all.
It was nuts that I was actually immobile and couldn’t do anything. I didn’t know if it was going to get worse than it already was. Would I need a catheter? A respirator? Would it get that bad?
Initially I would wake up and forget about everything, for a minute. Then when I remembered, my mood just fell and it was awful. Eventually I got used to it and didn’t forget anymore.
It felt like it would never get better, but it did. They took the artery line out and I was in a bicycle study. What is a bicycle study, you might ask? It’s a study where they bring a specialized bike to the end of your bed and they strap your legs in, extremely safely. Then the bike would start moving on its own with the choice of higher speed or higher resistance (if you were peddling).
The idea behind the study was that if you got some exercise while you were sick, you could recover and get stronger faster. I think it worked.
I was only in the PICU for 10 days and then I was back on the unit. I left the oxygen prongs behind and felt a lot better.
Soon after I got comfortable in my new room, my occupational therapist Kate came into my room to do some feeding tests. Purees went well but liquids not so much. I coughed quite a bit on the milk and I was really disappointed. I had my appetite and thirst back, but was still unable to please my cravings.
Next I went to the therapy room to try standing, after countless sessions of sitting at the side of the bed. I was (figuratively) jumping for joy! I got wheeled up to the parallel bars and had Jill (physiotherapist) on my right, Kate on my left and Barb (physiotherapist) in front of me. We were going for it! With both my hands on the armrests of my wheelchair I pushed myself up. I was standing for the first time in weeks! I was extremely proud of myself.
We did that for the next few days and it was getting a lot easier. I wanted to try walking. Jill and Barb thought it was a good idea so we gave it a shot. I stood up, steadied myself and then took a step and then another and then another. I was walking! Holy moly, I was actually walking. I sat back down filled with optimism for the next few weeks.
As time progressed, so did I. Now I could walk from one side of the room to the other and I could also do a transfer from my wheelchair to my bed with a walker. No one could believe the progress I was making (not even me). Things were looking up! I thought I must be going home soon. But I thought wrong.
One morning Jill came into my room for physiotherapy and I asked her what I would have to do in order to go home. That’s when she brought up Holland Bloorview in Toronto. I was confused. I thought I’ve come a long way, why would I have to go to another hospital? She went on about how at Bloorview they’re more focused on rehab than acute care. I was understanding more now, but how much longer would I be hospitalized?
Jill told me it could vary between three weeks and two months. Seriously? Another two months? I held in my tears as best as I could. Then my dad came in with my speech language pathologist Sara and Jill filled them in on our conversation. They all looked at me with pitiful looks and I couldn’t hold it in anymore. The tears streamed down my face. I couldn’t control them. I just wanted to go home. I couldn’t handle another two months. But soon enough it was moving day.
On August 23, an ambulance took me to Holland Bloorview. I have to admit, it was pretty cool riding in an ambulance. It didn’t take long and soon we were there. Holland Bloorview was very different from McMaster Children's Hospital, like wow!
At Bloorview you have a schedule for the week. There’s a Bloorview school, a lounge where everyone eats, and you can go home for weekends. There are family team meetings where you, your family, your social worker and your team of therapists all have a meeting and discuss your goals and progress. During your first team meeting (seven to 10 days after your arrival) they will give you an estimated discharge date.
My first day was busy, busy, busy. I met loads of new people. It was a little overwhelming, to be frank. I met all my therapists, my social worker and my head nurse. I was exhausted and in desperate need of a nap by the end of it.
During the next few weeks, I was progressing like crazy. I came to Bloorview being able to stand on my own for 20 seconds, tops, and now I was using a walker to get around. This was so exciting!
My physiotherapist Alanna was working me really hard! Which was great! Soon she was leaving to get married so I was getting a new physiotherapist for the time being. I wanted to surprise Alanna when she came back, maybe even being able to walk without any equipment? Hopefully.
When school started I was alone most of the time because my parents had commitments they needed to fulfill. The nurses kept bugging me about eating in the lounge or going to recreational therapy. I really didn’t want to. Socializing wasn’t my strong suit and I was incredibly shy. They repeatedly said that socializing is therapy too, but I was socializing with the nurses and my family. So eventually they got off my back.
Speaking of school, I’m in a Grade 6 to 8 class and my teacher’s name is Anne-Marie and the educational assistant is Judy.
When I first started, I hated it, to be completely honest.
My first thought was: “How could school get any worse? Have it in a hospital!” I wanted to go to MY school, where all my friends were. But I sucked it up and it wasn’t all that bad. Anne-Marie and Judy were awesome and I pretty much did my own thing most of the time. It was going pretty well!
With my new physiotherapist Andrea we were doing all sorts of crazy things like jumping, running and walking along a balance beam while squatting and reaching. It was nuts! I really enjoyed it and I was getting pretty good at it too!
We also went on daily walks with activator poles. Walking with the poles was getting a lot easier, so Andrea did the six-minute walk test on me. The test determines whether you need a walker anymore by testing if you can walk 500 metres in six minutes. I went 523 metres!
The next day I was independently walking around the hospital. I could LITERALLY jump for joy now and you bet I did!
Alanna was back and boy was she happy! I gave her an update on everything I could do. I could stand on one leg for a minute, I could jump, I could run and so much more! She was blown away! That day I climbed four flights of stairs, jumped rope, and did 'suicides' and basketball drills all while running! I was having a great day! I could run, I was feeling optimistic about discharge and they were weaning me off my pain medication. I was starting to see the light at the end of the tunnel.
Today was the day of my family team meeting and I was really hoping I'd be able to go home sooner than anticipated. I crossed my fingers. Once we were all in the meeting room (Alanna, Sarah—occupational therapist, Patrick—my social worker, Katherine—my child life specialist, Anne-Marie and my family), Patrick told us that my school was on the telephone line and so was the outpatient therapy clinic I would be attending at Kids Ability.
The meeting started off with how I’m doing medically (which was fantastic), then we began to discuss my physical capability. Alanna said I was doing awesome and that there were still some minor things to work on but overall I was doing great. Next, Sarah said that my strength is definitely coming back and that I won’t need any outpatient occupational therapy (yay!).
Then we got onto the topic of how I was coping with my hospitalization. Everyone said I was coping fantastically. I tried really hard to focus on the positives, so I’m glad it was noticed.
Soon after, my vice principal mentioned some strings they could pull to make the transition back to school easier for me. Things like having a buddy walk with me to class and carry my books, leaving class early so the hallway isn’t so busy, having a chromebook if writing was too tiring and being able to have a rest if needed.
I didn’t think all that was really necessary, and neither did Alanna or Sarah. So we ended up just going with the buddy, as a precaution. Finally, we came to the discharge aspect of the meeting. Drumroll please… I’m going home a week early!
Out of nowhere the waterworks came gushing out. They were out of control. It just dawned on me that I was going home NEXT week.
That’s so soon. I just started connecting with some of the people here, like my roommate and other clients. I just got comfortable with eating at the lounge, going to recreational therapy and socializing. But now I’m leaving.
Two days before my discharge date I realized that I didn’t really want to leave. I was used to everything here at Bloorview and I didn’t want to have to deal with such a drastic change all over again. Plus, I made friends that I may never see again and it’s hard to be okay with that. I’m hoping we stay connected even though we’re so far away.
But I need to remember that leaving is good. It means I got through the most difficult thing I’ve ever had to deal with and I’m proud of myself. I also can’t forget about my friends back home, I honestly cannot wait to see them.
This journey sure has been difficult, but there are positives. I’ve made friends I would have never gotten the chance to meet otherwise and I’m coming out of it with a whole new perspective on life. I’m so much more thankful for the little things now.
To other kids going through something similar, I would say keep your head up and focus on the positives! That’s what saved me from falling into a pit of sadness. Sure, I was sad, but it could have been worse. It may seem like it doesn’t ever get better, but it does. It always does. It can really suck, but when you’re better you feel like SUPERWOMAN. Just about walking or running semi-fast or maybe even pushing yourself in the wheelchair. Try not to let it get you completely down because there really are some positives about the whole situation. I made friends that I still talk to everyday and the nurses can be GREAT. They’re just great people. So find the positives in a really big negative.