Pneumonia, Fever Back - Jamie Boyle Guillain Barre Syndrome
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.
Pneumonia & Fever Back – Jamie Boyle Guillain Barre Syndrome
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.
Guillain Barre Syndrome day 10, a Neurologist came in today and said to my family, “ Jamie Boyle will recover from GBS, he will get better.” Even though nothing is guaranteed in life those words help family members as a way to say it’s okay, everything will work out. He’s fighting and will get through this.
My parents said I had to give consent to tracheostomy by nodding my head. My medications were changed today to relax me as I can’t stay on certain meds too long especially coma medications. I was stable today and lungs were good, I was getting better.
I kept on trying to talk which could hurt my vocal cords. My mouth was very dry. Everyone kept telling me to stop trying to talk. I kept on telling my parents I wanted them to stay with me tonight, as I find the nights long. Laying there unable to speak, unable to move, unable to communicate makes time go by so slow. My recovery from Guillain Barre Syndrome is going to be very slow and long.
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.
It’s now day 8 since this all started with Guillain Barre Syndrome. My nurse on duty today was Renée, whose very caring and helpful. My parents arrived around noon. They had to do another Bronchoscopy for mucus removal early this morning with the camera. My readings were stable with a temp of 37.2. The nurses had to change my bed today, the other one was a trial bed to for the new ICU. My parents just couldn’t imagine how they were going to move me from one bed to another. They did it though.
My lungs had to be cleaned manually this time at noon. The doctors were going to do EMG nerve conduction test today, but I wasn’t awake enough. One of the nurses on duty Sophie requested Louise, a spiritual care practitioner to follow my recovery from Guillain Barre and to also help my family through this difficult time.
My lungs needed to be cleaned manually again at 2:20pm, it was only 2.5 hrs since last time. My recovery from Pneumonia seems to be getting better. My parents said I was very agitated around 4 pm, trying so hard to talk when he opens his eyes. It was just hard for everyone to watch this as I try and recover from GBS.
Day 7 since becoming ill with Guillain Barre Syndrome, I’m still in an induced coma and family is worried. The doctors and nurses are changing my induced coma drugs to a milder one today as they don’t want me in a deep sleep. My brother Chris and my sister Stephanie visited me today in the ICU. It was very hard for them seeing me like this in my coma completely helpless as I try and beat GBS. My uncles Andre and Brian called today inquiring on my status and seeing how I was doing. My parents were busy answering messages and phone calls from concerned people. Everyone was very concerned. All everyone could do is wait and see if I pull through.
Day 6 Guillain Barre Syndrome, still in an induced coma, the nurses and respiratory therapists had to do manual breathing on me using a bag valve mask (BVM) today as something happened. It has many names like Ambu bag, manual resuscitator or self inflating bag which is a hand held deviceused for patients who are not breathing or not breathing adequately.
My parents believe the tubes may have been unhooked when changing my positions. They knew something was going on as they had to leave the room , the nurses were hurrying. My mother was very upset and there alone as she watched on unable to do anything and worrying. The nurse Renee was excellent, she went to talk to my mother in waiting room and said these things do happen from time to time. It seemed like an eternity for my mother before Renee came in to talk to her. My mother kept walking to my room checking but the curtains were still closed waiting and worrying.
They had to do another Bronchoscopy today using the camera again removing mucus from my lungs. I also had a slight fever and I received my 4th dose of IVIG today. They were also checking my heartbeat today and blood pressure during treatments and it was good.
It’s now day 5 since Guillain Barre Syndrome started, I’m still in an induced coma and now I have a touch of pneumonia starting. I also have a fever of 39 and was given antibiotics. They also had to remove mucus from my lungs with camera called a Bronchoscopy. My family watch on as I’m fighting and hoping for the best. GBS is taking a toll on me.
My parents called the hospital at 6 am this morning checking in on me and Dominique was the night nurse. She told my parents that I had a good night but that I had a little fever. She also said they had to change the breathing tube today.
After all this I was officially diagnosed with Guillain Barre Syndrome and now I lay here in a induced coma. The lumbar puncture test the day before confirmed what I was thinking all along. My breathing became so compromised they had to place me in a coma, they intubated me and placed me on mechanical ventilator. Now I lay here in a coma and unsure on what lies ahead. My life now is in the hands of the doctors and nurses that are taking care of me. It’s crazy on how Guillain Barre Syndrome can literally turn your life upside down.
I knew I was in rough shape, I was literally walking a tight rope between life and death. As I sit here and write this, this is the first time seeing these photos of me in an induced coma fighting against this awful auto immune disorder called Guillain Barre Syndrome. It’s kind of hard to watch as it brings back memories, emotions, and everything that I literally had to go through.
While I was in my coma they had me hooked up to so much stuff. They had me on a feeding tube and were giving me 3,000 calories a day.
I lay here completely helpless. One moment i’m awake and the next moment i’m in an induced coma. I don’t remember much but there are a few things I do.
Here is some of the equipment that is keeping me alive. It’s kind of scary to think that my life is relying upon this machine but at the same time it’s pretty neat as well.
Everyone experiences different things when placed in a coma. For some they don’t remember anything other than just a gap in their life with no idea what was going on during this time. For me as I lay here the only thing I remember or for what I thought was real is me laying in my hospital bed and the doctor standing behind the curtain. I could see him through it but he would not speak to me just standing there silently. I was telling him I did not want to go on but again he would not say anything. For some reason at this point, probably out of frustration I called him a coward as he just stood there not speaking to me but was he listening? I didn’t want to go on anymore, why wasn’t he listening? I don’t know what happened after but all of a sudden I wanted to live. I started telling the doctor to help me and that I wanted to go on and live. I continue to lay in my bed with no response from the doctor unsure if I’m being heard and what was to come.
Then all of a sudden I heard a meeting between the doctors, hospital management, and my wife and parents discussing how they were going to pay for all my treatments. I could hear the stress from everyone as they tried to figure out how they were going to pay for this. I kept hearing a man saying that this is what was gonna cost every day as I required so much care. I remember hearing my wife and my parents having private conversations trying to figure things out. I lay there wondering what was going to happen to me, how are they going to pay for such a large bill go forward for all my treatments. I felt the stress from everyone, I was stressed out to thinking I cannot even help, I cannot speak, what was going to happen to me. Then all a sudden I hear an agreement was reached towards the cost of my treatments and care going forward. Now I know this was not real but just something that was going through my head while I lay there in my induced coma.
Will I ever come out of my induced coma? Will I be healed from Guillain Barre Syndrome? What will come next of my life as a result of GBS? How long will I be in this coma for? So many questions but yet so few answers.
My parents and my family waited next to my bedside everyday worrying as I lay there helpless fighting for my life wondering if I’ll be okay. This time was not just difficult for me but for everyone involved.
