Author: Jamie

Another day with Guillain Barre pain, I’m sore, I’m aching and very uncomfortable. Eric was the orderly helping me today along with and Serge, a 30 yr nurse that now works part time. I needed to change positions often as I was in pain, I’m sore and I just couldn’t get comfortable. Blood pressure medication that I’ve been taking for years were placed on hold since my blood pressure is good. Oxygen in blood was 96 which is good! Another round of IVIG is scheduled for August 26th. Day 2 now with no bronchoscopy and camera used. My parents worked my hands and feet today…no physio on weekends. Guillain Barre pain, legs are very sore, can’t get comfortable. They are hoping to try wheel chair next week, and hopefully eat and talk also.

Serge gave popsicle pieces today as my mouth was so dry. My body was craving sugar. Once I had one I wanted more. They usually don’t give popsicles or water . I kept on bugging for more saying I’m fine so Serge eventually gave in. I enjoyed them immensely. It felt some good to have them.

Today I got very upset with my parents for not being able to understand me. I’m taking my time to mouth the words clearly but why can’t they get it. Lip reading is not that hard. This is therefore beyond frustrating not being able to communicate. It’s so frustrating for us both. They always wanted to go to the letter board, arghhh… I hated that board…. you know how long it takes to do each letter for a word let alone a complete sentence.

I guess Serge spoke to my parents in the hallway as he could see how upset I was and my parents. He told them they should leave for a bit but they felt guilty for leaving. They did leave and came back at 6pm. I was more calm… and they also can understand my frustration. This whole situation is frustrating. I can’t wait to get better, I can’t wait until I’m able to speak again. So I can only wish and take things one day at a time.

Today I was in a lot of pain, therefore I needed pain medication for the nerve pain that’s associated with Guillain Barre Syndrome. Pain was shooting all across my body. I just can’t get comfortable. I have Physiotherapy everyday along with occupational therapy which is contributing to my discomfort and pain. Nerve pain is something else I tell you.

No bronchoscopy needed again today. My parents could hear a whisper coming from my mouth as I was trying so hard to talk. I know I shouldn’t be trying since I can damage my vocal cords. It’s just so frustrating not being able to communicate people and so frustrating when they don’t understand. Paralyzed and unable to speak.

Dr. Marrero, my Neurologist came in today. He’s always a pleasant guy to see. Such a knowledgeable man with a Guillain Barre Syndrome. With everything I’m going through it’s hard not to smile when he’s around. Always happy, smiling, positive and always encouraging and optimistic. You can’t help but believe one day things will get better.

Today I also learned my job at Royal Bank of Canada is secure but I will have to go through training again as a refresher as it was a new job. That’s one bit of good news that if I do get better from Guillain Barre I have a job to go back to.

I was breathing by myself with back up but I needed help at suppertime. My parents keep telling me I should not try to talk too much since it could harm my vocal cords. I can’t anyway, small faint whisper. I just can’t stand the letter board to communicate, and lip reading people have a hard time. It’s so frustrating when no one understands you!

Louise, the spiritual care worker, visits quite often and checks up on myself and my family. I always joke saying that when I finally get to eat for the first time since becoming ill with Guillain Barre Syndrome I will put on 10lbs. in one day lol. It sucks not being able to eat or drink. So craving a nice cold glass of water…. I was also inquiring with dietician to see what types of natural food I should eat to get better faster and help towards my recovery with GBS. Most importantly if there is something I can do to help me get better faster I’m going to do it.

My parents asked me if my grandmother could come visit me in the hospital now and I said yes. I didn’t really want anyone seeing me like this. I also had a lot of phlegm again tonight. The breathing tube fell while being moved and it felt like I was chocking. I’m just hoping that tomorrow my nerve pain from Guillain Barre Syndrome won’t be as bad. My body feels like it’s on fire and it’s a pain like nothing else.

Dr. Marrero a neurologist in Moncton at the Dr. Georges L. Dumont Hospital came in to see me today. He said everything was going accordingly but says with Guillain Barre Syndrome recovery takes time. He’s one of the best doctors I’ve ever met. He’s such a pleasant doctor, always smiling, greets you with a hand shake and takes his time to explain everything. Dr. Marrero is certainly very knowledgeable with Guillain Barre as he’s saw many patients with GBS over his career. A very encouraging doctor that truly cares about his patients and loves his job. He gives me hope that I will recover from GBS.

Last night I finally had a good night sleep too. I was breathing more on my own today but the mechanical ventilator is there for back up if I get too tired. My Dad came in today and we had a good visit, my mother however stayed home with a sore throat to prevent any chances of me catching something. Mucus was suctioned out of my lungs today but overall it was a pretty good day. With Dr. Marrero a neurologist dropping by encouraged me with my prognosis and recovery from Guillain Barre Syndrome. How long my recovery with GBS will take is unknown.

It’s been now 2 weeks in the hospital at the Dr. Georges L. Dumont since becoming ill with Guillain Barre Syndrome, day 14. Frank was my nurse today. I didn’t sleep much last night even with all the medications they give me.

Today they had to do another bronchoscopy this morning. I also had physiotherapy again which included lots of stretching and moving my arms and legs to prevent stiffness since I’m unable to move. When you go to a hospital you lose all dignity. I hate being paralyzed unable to do anything and therefore unable to care for myself. I had to have a rectal tube inserted for bowel movements today. What a life! I hate everything about being in the hospital. I hate what Guillain Barre Syndrome did to me.

Today, Rheal, one of the orderlies on duty gave me a shave. I can’t do anything, I don’t like this. I’m now therefore relying on everyone to care for me. This is something I’ll never get used to.

I continued to have a lot of burping again today. It feels like I’m chocking every time I do. I was also breathing on my own this evening for a bit. Certainly by far the hardest thing I’ve ever had to go through and learn to deal with.

No fever today. Lungs better and my parents massaged my hands and feet. I was very emotional, I just want to go home, I can’t stand being in this state in with no end in sight. Sue got a smile from me this evening. Sue told me she will be my night nurse and she’ll also be here all night. I replied, “I’m not going anywhere lol.” My parents said he hasn’t lost his sense of humour. I might not have lost my sense of humour but dealing with all of this has taken a toll on me. Guillain Barre literally flipped my life upside down and I have no choice but to deal with it. I’m just not sure I can do this.

Today I started my Physiotherapy Rehabilitation, first session is this afternoon. My nurse for today was Sue, one of my favourites. Last night I was able to get 3 hrs. sleep which was good. They had to use camera again today to clear lungs which were better this morning. They’ve had to do many Bronchoscopy procedures on me now since becoming ill with Guillain Barre Syndrome and pneumonia.

My Physiotherapy Rehabilitation session at 1pm went well. I smiled and told the physiotherapist and the spiritual worker that I’m going to work my ass off to get better.

Today I was having hot and cold feelings all day. One moment I’m extremely hot, the next moment I’m cold. My parents put cream on my hands and feet and they worked my hands, toes and feet to prevent stiffness from being unable to move. Trying to keep everything loose. I was kind of tired from physiotherapy as well.

All day I was burping a lot so they checked for leaks  and had to use camera again at 4 pm. There was less mucus, lungs looking better. I was so hot at times my parents and nurses continued to put ice cold facecloths all over my body. My parents left at 8 pm and I watched TV the rest of the night till bed. The days are so long. Time literally slows down.. I hope I get better soon.

GoFundMe Help Jamie Boyle Fight 
With Guillain Barre Syndrome – GBS

It’s been 10 days now that Guillain Barre Syndrome put me in an induced coma. On August 3rd 2019 my breathing became so compromised that the doctors had to intervene as a result of my symptoms and deterioration health wise from GBS. Now 10 days later I’m awake only to learn the difficult road ahead as I face my recovery from Guillain Barre Syndrome.

It’s been now 10 days since since being placed in a coma I am now awake. This was by far the hardest day of my life. I have just learned that I am now completely paralyzed from head to toe. I cannot move a single part of my body, I cannot speak, I cannot communicate with the nurses, the doctors, my family, I can’t do anything. Is this really how my life it’s going to be? If so I don’t really want to go on.

Guillain Barre Syndrome Has Completely Paralyzed Me Head To Toe

Wow! I sit here thinking is this for real? Why? Why and how did this happen? I cannot believe my life has literally changed in an instant. Guillain Barre Syndrome has changed my life forever. The feelings, emotions, the anger, the frustration and the loneliness is what I’m trying to cope with now. It didn’t seem real, it felt like a horrible dream but the truth of the matter it was very much real, I’m now living it.

Guillain Barre Syndrome Nerve Pain

On top of just learning that I was completely paralyzed I’ve now just learned about the nerve pain associated with Guillain Barre Syndrome. It’s a type of pain like you’ve never had before. My body felt like it was on fire. The nurses and my parents had to place ice cold face cloths all over my body. The face cloths almost dried instantly after being placed on my body. My body temperature was normal but the feeling that my body was on fire was all caused by nerve pain. They had me on high dose nerve pain medication which included Gabapentin and Dilaudid injections every 4 hours for the severe pain I was experiencing.

While going through this I had to deal with the lack of communication and struggles associated with it. I couldn’t speak, I couldn’t move, I couldn’t ring the buzzer for help. I felt completely helpless. I tried speaking with the nurses and my family but not everyone was great at lip reading. The frustration with the inability to communicate with others was taking a toll on me. I felt so lost and scared at the same time as I couldn’t get a hold of anyone if I needed anything. All I did was lay there staring at the ceiling feeling so lost and helpless. Time literally stood still as I can’t turn the TV on, change channels, can’t pick up my cell phone, can’t go on my iPad, can’t go on Facebook, I literally couldn’t do anything. If this is what my life is going to be I didn’t want to be living.

Why did this happen to me? Will I ever recover from Guillain Barre Syndrome? Will I ever get out of the hospital and return home? These are the questions that are running through my mind today but no one can answer these. Today was a rough day and only time will tell if my life will ever return to normal from this horrible debilitating illness and disorder called Guillain Barre Syndrome. Now I wait for the unknown.

Today was a rough day, my pneumonia came back and I had a fever of 38.5 degrees Celsius. I just want to go home… I want the tubes out and I want out of this hospital. Sue was my nurse for the day. My antibiotics were changed and sedation meds were turned off. My parents and nurses said I was very irritated today. They gave me Ativan to try and relax me.

Caleb visited today so my parents brought him timbits for being a brave little boy. I don’t remember any of this as I was still highly medicated. Today extra water was also added to IV to help with my dry mouth. I was so thirsty and so hungry too! Pizza and a pop is what I also kept asking for.

I had a lot of leg pain today. My parents said that I thought I had my shoes on as my legs felt so heavy. My parents left for supper and came back at 7pm. While they were there I was very angry and they had to leave at 8:30pm. I guess I kept on saying I want out of here, put me in my wheelchair and I was going home. Nurses told them they were going to give me something to help me sleep and also calm me down. Audrey was my night nurse.

This was not me! I was highly sedated, in pain, frustrated, tons of emotions running through my body. It was tough for me and therefore tough for my family seeing me go through this. I don’t even remember any of this which also includes seeing my son.

These are notes my parents took in their journal to help them cope with my recovery. The spiritual worker, Louise, told them it will help. Consequently this is tough on everyone seeing me sick with Guillain Barre Syndrome. My family continues to hope I’ll get better from GBS as well as from the pneumonia, fever.

Guillain Barre Syndrome day 11, tracheostomy surgical procedure day. My nurse for the day was Joanie, she’s an amazing nurse one of my favourites. The tracheostomy was done at 10:30am this morning, no bleeding, everything went well! I was stable. The doctors stopped sedation at 11:30 am and I was responsive to doctor who checked my lungs for fluid (ultrasound). There was no fluid around my lungs and pain meds were given.

My parents said I looked so much better with tubes out of my mouth. After looking at the pictures, really…. I looked pretty awful and definitely need a shave, wow! I lung X-ray done and another Bronchoscopy with camera used again to clean mucus in lungs before the trach. Rheal, one of the orderlies, kept teasing me and eventually did get a smile from me.

I asked Joanie today if I was going to space. She told me I was staying right here lol Wow! I guess the drugs were still in me.

Nurse Audrey called my parents at 8:15 pm just after they got home and asked them to come back. They stayed till 11:40 pm The nurses ended up sedating me because I was scared to go to sleep and I asked my parents to be power of attorney for me tonight. I still didn’t end up sleeping tonight even with 2 ativan and sedation, I stayed awake till 5am. Not being able to communicate, call for help, ring the buzzer and completely paralyzed is scary. A truly horrible feeling as a result of Guillain Barre Syndrome.

Day 9, still in induced coma with Guillain Barre Syndrome. Today was a rough day, very depressing, I was still trying so hard to communicate with my family. Renee and Louise were very helpful in trying to figure out what I was trying to say to them. Not being able to communicate with people was definitely the hardest.