Hello Everyone! Hope you all had a great weekend. My mornings in the hospital always start off the same way; First, the doctors come in bright and early with updates around 6-7am (I fall back to sleep after that because I am not a morning person) and then I fully wake up around 8:45am only because I have nebulizer medication and online school. I take the nebulizer twice a day and online school usually keeps me busy from 9am-3pm. Even though we’ve been in the hospital a while and I miss home, I joke about how SickKids is my all-inclusive vacation in the city 😂
Yesterday’s Swallow Study
At 2:00pm I had a scheduled swallow study. A swallow study is a type of x-ray test to help determine whether or not foods and liquids are going down the correct way. They mix the food or liquid with a substance called barium which helps it to show up/ be more visible on the screen. My mom and I headed down to the second floor to where the test was being performed and we took an array of different foods that varied in texture. I tested barium mixed with chicken fingers (solid substance), a cookie (crumbly substance) and an orange drink (thin substance). Overall we found no immediate or serious complications with my swallowing. However we did notice some liquid sneaking down through to my, airway (down towards where my trach is) as well as a small amount of food getting stuck on top. The results from the x-ray were then sent over to my doctor for further examination and what to expect moving forward. Overall, this swallow study occurred because I have been having some troubles with swallowing food and liquid (especially water); it was coming out of my stoma. This is bad because we don’t want to cause aspiration in my lungs or pneumonia. Since I had a recent laryngotracheal reconstruction, we think it will just take some time to rework and retrain my muscles, therefore its crucial that I work on some swallowing techniques with the occupational therapist and make sure to take careful swallows.
Update on the “Cadillac” Trach
Out of all the places in the world and the one time in almost two years that I need a custom trach, of course it’s coming from Texas- which happens to be under snow! Last week we found out that the plant had shut down and it may take a couple more days for the trach to ship out (possibly last Friday). This is why we are currently still at the hospital. Although, we did get another update from the docs yesterday, and they said that the trach has been shipped and should be here sometime today! Can’t wait to finally see this thing!
As far as plans go, we have a bit of a timeline now. Hoping that the custom trach comes today, they will insert that one and then keep me overnight to make sure everything goes smoothly. Then tomorrow, I am headed back to the OR. They’re going to do another bronchoscopy to look around to ensure everything looks okay and that we can move forward. If everything looks good, we should be able to go home on Thursday and continue on my recovery towards decannulation.
Thank you so much for reading! Hope you have a wonderful day ❤️ -Zoe