Month: August 2019

Not stable today, lot of fluid was drained from my stomach today and had a kidney function test this morning, to see if I may need dialysis. I had a rough night. I get so HOT, especially after pain meds. I’m not breathing on my own today as well.

A specialist came in today for my stomach. With Guillain Barre Syndrome it can cause many issues. Blood pressure medications were given today to bring my blood pressure back up as it was 93 over 49. Antibiotics were also started again today as I might have an infection.

The psychiatrist came in to talk to me today. She asked about the kids visiting me. My wife and I decided together no, as it can be quite scary for kids seeing their father hooked up to so much medical equipment. When stuff starts getting removed and when I can talk, we’ll FaceTime to make sure they are okay first before visiting in person. She also mentioned that she is going to change sleep meds so I can sleep.

No feeding tube today, just IV. I started passing some air today which is good. I definitely don’t want any further issues. It was a busy day made me sleep after all the tests were done. Louise came in to see me but I was sleeping. The ICU doctor on duty came in at 4 pm and said my kidneys were looking better than yesterday. Kidney function test better, dialysis may not be required.The blood pressure medications brought my blood pressure up a bit, but don’t know where the infection is that I have. They may try feeding tube again tomorrow.

Psychiatrist came in again about medications and she noticed how I knew so much about my medications, my treatment and my interest in all of this. She seen how proactive I was with my health and well-being. She was very impressed, and mentioned how polite I was even going through all of this.

I joked with the nurse asking if the IV bag hanging had apple juice in it. You have no idea how desperately I wanted a drink lol. I had no temperature today. While my parents were gone for supper, the catheter plugged up, I woke up coughing and it sprayed everywhere. The catheter had to be changed.

I’m being positive about my next round of IVIG treatment. Hoping this will further help me towards my recovery from Guillain Barre Syndrome. I know for one thing I can’t wait to eat for the first time. I also did some breathing on my own this evening. My blood pressure was better 106 over 59 at 8:30 pm. My parents we left at 8:45 pm. It was a very long day and I’m all ready for the night.

Today my stomach was really bloated, I had abdominal pain and my stomach was distended. The doctors and nurses have been monitoring me and I’m waiting on a prescription. They would also like to see me in my wheelchair 1 to 2 times per day. I’m a little tired today and I needed more help with my breathing.

My mother spoke to Louise today about me feeling so abandoned in my new room. Last night I had phlegm and I felt like I was chocking and I couldn’t reach bell for help, I tried making a clicking sound with my mouth but no one came. I feel completely helpless. I didn’t sleep all night and I am tired today. The nurses have to do hourly checks all night but no one was coming. They might have a monitor in the nurses station with my vitals but I needed help. So frustrating being unable to communicate, call for help, I’m completely helpless, a scary feeling when you’re in need of something like chocking. I don’t like my new room as it’s too far away from nurses station, I can’t try and get someone’s attention if I wanted to. Guillain Barre Syndrome is awful in more ways then one.

Breathing good today with backup if needed. I was given a spray instead if ice chips now. No more popsicles or ice chips for me. Today I didn’t want to go in wheelchair, I didn’t want a shave either, I’m just too tired.

At 8:30 pm tonight I threw up twice. They are now going to do a stomach x-ray. Stomach bloated, I had abdominal pain, my belly distended and also hard as a rock. They did the X-ray and it showed no blockage, just air in stomach. I was almost crying from pain. My parents hated seeing me in so much pain. They had me on gravel for nausea and also gave medication for bloating . My Potassium is up and medication was given for that also.

Dr LeBlanc came in to check up on me this evening. He said too much talking and ice chips will give you bloating. Air also can’t be expelled cause of no body movements. They also did blood work this evening. They put him on my left side to help expel air… I thanked them twice for helping. I could sleep all night like this. First time laying on my side as I’ve been on my back the whole time.

My parents left at 10pm as I was very tired. It was also a rough evening . I was heavily medicated including serotonin . My parents are also going to start writing important things on the white board so nurses will know what I need to better able to communicate. A rough day, communication barrier is getting to me.

Dr. Eric Brideau, Pulmonologist, a lung specialist in Moncton came in today and said my pneumonia recovery is improving and my breathing is getting better. I still have a long recovery ahead though. By Friday they are hoping to try 10 minutes off the ventilator. They keep making me work harder with my breathing and I’m fine with it. I’d love to eventually get all these things unhooked off of me. They checked my blood pressure today a few times 90 over 76 and 103 over 88. Little low which might explain why so tired during physio. It was also 4 days now without bronchoscopy with camera for cleaning of my lungs which is so good. Great signs for pneumonia recovery.

Today I also changed rooms in the ICU at the Dr. Georges L. Dumont Hospital to another room with a ceiling power lift. My 1st time in a wheelchair today and I slept in it for 1.5 hrs. as I was tired. My parents observed during Physiotherapy so they will be helping me with my recovery from Guillain Barre Syndrome.

While Dr. Eric Brideau was in and he asked my parents about their sleep and told them they need to take care of themselves because he knows they are there all the time. They don’t want them in a bed next to me. My parents thought I was being very demanding today and I told them to GO !! Sometimes they don’t get it, for everything I’m going through and what I’m feeling. I took more pain medication for Guillain Barre Syndrome nerve pain in the morning and one at 4:45pm as I was in so much pain. My stomach was very distended, bloated, and hard as a rock. I wasn’t feeling the greatest at the end of the day. So one more thing to deal with now.

Better day today, but no more popsicles, no more ice chips for me due to aspiration pneumonia risk.That’s too bad, they were so good. I guess they had never seen that before. My body needed that sugar, it’s almost like my sugar was low. I started coughing more today so no more for me. They are worried I might also aspirate. Aspiration pneumonia risk is also high and I shouldn’t be having them anyways.

Dr. Marrero, the Neurologist in Moncton came in and talked about plasma exchange today if needed after my next IVIG treatment. Plasmapheresis is only done in Saint John and Halifax. I’m still on antibiotics. Another day with no bronchoscopy with camera cleaning,day 3 now, which is good.

Eric was the orderly on duty again today and he loved to joke and tell my parents all the time that we were out partying last night. He was a funny guy, always made everyone smile myself included.

During the day my stomach got very hard, it might be gas from the tube feed that I am not agreeing too. Ice chips causing me to burp after having some. Looks like no more popsicles, no more ice chips and therefore back to the sponge with water to dampen the inside of my mouth.

My mother came in today as my father headed to shediac to water my seedless grapes in my greenhouse. With me in the hospital trying to recover from Guillain Barre Syndrome there is so much I’m unable to do. I definitely didn’t want my seedless grapes to die with all the heat in a greenhouse.I’m laying here worrying about other things just not my health. I also have chickens, turkeys and ducks that Cheyenne, the kids, the neighbours and my old friend from school are helping out taking care of them while I’m in the hospital. Happy one less worry I have to worry about. I asked asking about Chris, my brother today which I didn’t realize Chris and Steph had been in. I don’t remember.

With Guillain Barre Syndrome nerve pain it can be quite bad. I received dilaudid for pain at 2:45 pm. Ice cold facecloths were also placed all over my body again today. It was just like my body was on fire, and the facecloths dried as fast as they put them on. I was so tired today…doing more breathing on my own.

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.