This past week I have had a cold, a bad cold, I had a sore throat, my nose ran, everything. It made me think how different it is when I am sick verses other people, because I cant have halls candies or cough medicine. I cough but there is nothing anyone can do to make it better.
I had to have ice cream cake instead of halls since it melts and puts me less at risk for aspirating. Aspiration is kind of like when food goes down the wrong way, because for me it goes in my lungs. For me, aspiration is caused because I have a hard time swallowing, this is popular in people with Cerebral Palsy. Aspirating can be very dangerous because it is a cause of pneumonia.
I began getting tube fed in grade 8 but I was still eating meals as well, but I really wanted just the tube. I remember having macaroni with soup and cheese on top everyday, this was something that was easy to eat and didn’t cause me to aspirate as bad. Everyday after school I would have thickened chocolate milk, it tasted awful but we had to thicken it so it would be easier to eat and be safer for me. I remember bawling my eyes out at supper because it was frustrating trying to eat before the tube and I wanted to just use the tube. So in grade 8 I got my feeding tube, I had to go to Edmonton Stollery Children’s
Hospital, I got a long one first for a bit but then it was switched to a shorter one. Nw it is like a balloon in my stomach. When I first got my tube, I began getting abdominal migraines, and I would throw up everyday. Abdominal migraines, are not headaches, they are stomach pains that are caused by the same triggers as migraines. It took 3 years for them to figure out what was wrong and why I was having such a hard time!
Did you know that between 150 000 and 300 000 adults in Canada have long term feeding tubes? Mine has been in for 8 years. I eat every 3 hours. Up to 3 times a week I can have a treat that I eat through my mouth, my favourite is blueberry cheesecake. The reason I have the feeding tube is so that I don’t aspirate as much. A positive of the tube is that I am healthier and I am not losing weight. The negative of having a feeding tube is not being able to eat what I want and I have to be careful of what I eat and to eat slowly when I do have my treats. If I eat a treat that day I find I cough more while I am sleeping, and it can be uncomfortable and not safe for me. Having my feeding tube is the best decision I have ever made for myself, I know it sounds weird, but I am so glad I did it, because eating was so frustrating.