Month: September 2019

After 60 days in the ICU at the Dr. George L. Dumont Hospital in Moncton I must say good bye as my journey as I recover from Guillain Barre Syndrome is now headed to Fredericton. Tomorrow I am heading to the Stan Cassidy Rehabilitation Centre where I will continue my recovery from GBS.

I have to say after 60 days of being here in the ICU I will miss everyone. Despite all the challenges I have faced and the condition I was in there’s a lot of good moments and laughs along the way. There was also a lot of tears and emotions as well. The nursing staff and the doctors in the ICU we’re amazing. They treated me like I was family as I was literally there for what seemed like a lifetime. I was even treated with lobster by one of the doctors there. I always joked with him saying where is my lobster and that’s all I wanted when I started eating for the first time again. Every time the hospital food came around it wasn’t lobster. To my surprise the doctor one day brought in lobster for me.

I’m really going to miss the nurses and everyone that took care of me in my time of need. They were amazing! I’m just sad to say goodbye but at the same time I am looking forward to the possibility of regaining my life back as I had to Fredericton.

Today is tough I have to say goodbye to Cheyenne, my kids and my family. My kids came in to see me as I will be heading to Fredericton first thing in the morning at 7am. It was the time that I didn’t want to end as I knew the moment I left Moncton I wasn’t going to see my children for a while. With the long drive and the kids schedule with all their activities it would be too hard to come up and visit. For the rest of the day I just concentrated on spending some time with them and enjoying every moment. It was a great day but a sad day at the same time. Tomorrow my recovery from Guillain Barre Syndrome continues in Fredericton.

Great day, I’m eating pizza for the first time since Guillain Barre Syndrome all started. Let’s put it this way I’ve been craving it. Pizza and water really. My parents always said that once I could eat they would treat me to pizza. Well today’s that day!

We got Pizza from Pizza Hut in Moncton, a large Canadian Pizza with stuffed crust. Talk about good!!! It tasted as good as I imagined. Lol. The only thing I had to wait for bites as I couldn’t feed myself. I have a bite, my dad has a bite of his, lol.

After that great Pizza, my dad gave me a shave. This whole not being able to do anything yourself is something I’ll never get used to. It’s so weird having people do everything. You lose all dignity when you go in the hospital.

Today the family came to visit me at the hospital. My parents, my sister and my nephew. It won’t be long now till I’m headed to Fredericton at The Stan Cassidy Rehabilitation Centre to start my recovery from Guillain Barre.

I wasn’t sure how my nephew was going to take it seeing me in the hospital but he was good.

While they were here my dad cut my finger nails as they were getting long. The things you can’t do after becoming paralyzed with Guillain Barre Syndrome on August 1st, 2019. In any bad situation you need to try and have a laugh every once in a while. It was kind of funny, dad doing this. There was a laugh or two.

In a little over a week my recovery from Guillain Barre will be heading to Fredericton. I’m anxious to get my life back just sad to leave Moncton where all my family is, my kids. It’s something I have to do, best Rehabilitation Centre around, just going to miss home. It’s too bad Moncton doesn’t have a Rehabilitation Centre as well equipped as Stan Cassidy. I’m just going to enjoy my time with family till I go. Happy day coming but sad as well.

I can’t believe it, today is my first time outside in 50 days. Yes! Jamie Boyle first time outside in 50 days since becoming ill with GBS…. It’s been a while. It felt great to get out of the hospital. Does it ever feel good to get outside and get some fresh air. It wasn’t too hot, it was just perfect, even had a slight breeze. I finally got everything unhooked from me even my trach. Unfortunately I missed out on the rest of the summer as a result of Guillain Barre Syndrome. Being outside makes me think of gardening and playing basketball with the kids. Hopefully next summer I’ll be back at it and recovered from GBS.

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.