Day: September 17, 2019

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.