Things are holding steady in step-down, the water medication is working well. My lungs are drying out so everyone, including me, is very very happy.
Since I did well on the corking and my voice is getting stronger, yesterday the speech language pathologist (SLP) was here for a swallow assessment. It consisted of analyzing tongue and throat strength, chewing ice chips, and swallowing a few teaspoons of water. I did well enough on that assessment that I was allowed 12 teaspoons of water an hour.
I realize that doesn't sound like anything but it was pretty magical to me. To be honest, when the speech pathologist had me swallow the first teaspoon of water, I thought I was going to sink into the floor out of contentment. I sucked back my 12 teaspoons of water all day very very happily yesterday.
Today, I had part two of the swallow assessment which consisted of a Videofluoroscopic Swallowing Study. Basically, I went down to this room where I was placed behind this xray machine and was fed different types of liquids and soft foods. The food was laced with barium so the SLP could watch in real time how the food went down my throat to make sure nothing was going into my trach and that my esophagus flap was working. I was told by my visiting cheering squad that it was crazy interesting to watch as he could see everything on the monitors.
The SLP would put the liquid or soft food in my mouth and I would hold it in my mouth for a few seconds before being prompted to swallow. My first few times were pretty rough but then I kind of figured out how to slow down (aka not have an anxiety attack) and focus on what I was doing. I especially slowed down when she started putting the soft food in my mouth like apple juice and apple sauce as it tasted so good, even with the barium. All went fairly well but it did take me several swallows to get down the stickier foods. Thankfully I didn't aspirate on anything.
The result of the assessment was that I can have soft foods and thick liquids. I know that doesn't sound awesome but it is exactly what I expected. Much more excitedly, thick liquids = smoothies!! The SLP had a bunch of guidelines for me to follow that I barely listened to due to the smoothie excitement. About 5 min after the SLP gave the okay, this was in my possession:
My Christmas smoothie! It was divine and sublime and heavenly and everything I had been dreaming about the last 3 weeks. Due to the SLP restrictions of 'swallow intentionally only' and '3 swallows for each spoonful', I only made it through half of it before it melted too much that poor Isaiah had to finish it for me. But who cares, I had actual food!
I want to leave this post on a super happy note of "yay I had a smoothie, my dreams have come true" because that was the majority of my day. But then supper arrived and my excitement of food came crashing down. I realized how hard it is swallow actual food. Stupid applesauce and mashed potatoes. It tasted amazing (I wonder how long my tastebuds will enjoy hospital mashed potatoes), but after a few small bites, I was super tired.
It is probably good that the SLP talked so much about the importance of non-passive swallowing otherwise I would have probably asphyxiated. It was super discouraging. Especially when I think about how the doctors and dietitian won't wanted to take out my nasal feeding tube until in eating the full amount of calories. Considering today I managed about 4 regular person bites of food, this is going to be hard.
This is one thing I had never really thought would be a problem. For some reason, the transplant manual doesn't honestly say "every single muscle in your body will shrink and need to be rebuilt, even the ones you will have never considered before."
Just to end on a high note, one last reminder to myself that I finally had a delicious smoothie today!!! today!!