Author: Jamie

My first meal in 48 days since Guillain Barre Syndrome all started for me was a full course chicken dinner. Dam it was good! As you can imagine from not eating for so long your stomach shrinks and your appetite. I couldn’t eat all the food they sent me but I was happy to actually eat. I’m some glad I wasn’t on no liquid purée diet. Let’s just say it was a good day

The trach was capped today and will hopefully be removed within 48 hrs or so. Dietician talked about food selection. I’m on 2800 to 3000 calories per day. She’s concerned with losing muscle mass so now I have to eat a higher protein diet, double meat etc… I was told to drink 2 ensure drinks a day for protein. Dr. Brideau and the head nurse came in telling my parents I ate mashed potatoes, cauliflower, gravy chicken and sauce, apple juice and soup for his 1st meal… They were as excited for my 1st meal as me after 48 days! It was mostly a good day, eating and sitting for the 1st time minus the bacterial lung infection.

Well I did it, I passed my swallowing assessment test 100% which is also called the cookie swallow test. I had so many cups of different liquids, soft, thick, different food textures and some of it was gross especially the barium. I even got to eat my cookie at the end which is a funny story the nurses told me about patients going for the test. Many times, actually 90% of the people fail the cookie swallow test. They are disappointed when they come back to their room and didn’t get a cookie. Where’s my cookie? You only get the cookie at the end the nurses say, well then why call it a cookie swallow test. 🙂

Well I’m some glad I passed my swallowing assessment today and I get to eat some real solid food. I get to drink too! 🙂 During this whole stay in the hospital I can’t tell you how thirsty I was. They would always give me a wet sponge to on my lips and in my mouth. I would always suck the water out of it even though I wasn’t supposed to. Man I was thirsty! I’m glad to get food and water today. 48 days is a long time without that privilege. What’s for supper I can’t wait!

Well today’s the day I have my cookie swallow test which is an X-ray test that takes pictures of your mouth and throat while I swallow various foods and liquids. I have to admit I’m a little nervous that I won’t pass. I guess 90% of the people don’t.

Yesterday they tried with me a small sip of water and I had a small cough after I did. That’s not a good sign usually. I haven’t eaten solid food which what seems like forever. I’m so thirsty and hungry for real food. Hoping the tube feed goes today! Now I just have to wait for them to come get me for my test. Hoping for the best here.

Tuesday sept 17th….Day 48 just found out I have a bacterial lung infection. Dr Brideau ICU Doctor and lung specialist called my parents to ask about my allergy to sulfa as I have a bacterial lung infection which is common. A culture was taken last week and results confirms infection. Having treatment for 1 week. There were two spots of bacteria on my lungs. Not a great start to the day. My cookie swallow test better be good later today. I need some real food and some good news for once.

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.