Life At Home With My New Flap - Week 1
On July 21st, we were finally discharged from the hospital. We were so excited to be able to see the kids and give them hugs and kisses. Pamela and I didn't know what life would look like when we got home, but we were ready to adjust and tackle what we needed to. Pamela's dad came to pick us up and take us home that afternoon.
Before we got home, we had to have a hospital caseworker get the supplies we would need for home. They had to order us a gravity pole for my bag of liquid food. We had to order the formula for my liquid diet. While we were in the hospital, the company for the formula called to speak with us about the supplies. The formula I would need is similar to Ensure but is considered medical-grade where Ensure is not. Pamela was speaking to them on speaker so I could hear it. They said to her so our notes show that we need to send you a month's supply of formula. We looked at each other in confusion because we had been told I would just need to be on the formula for a couple of weeks. Pamela told her what we had been told originally and asked if we could start with a 1 week supply. Pamela then asked if we did in fact needed to do a month's supply what would the cost be? The customer service associate said that Derek would need approximately 8 formulas a day for a month so that would be roughly $1,000. Say what? I could get a month's supply of Ensure at the grocery store for cheaper and by the way, insurance doesn't cover the hospital formula either. We were in complete shock. In reality, we didn't even need a week of the formula either.
Next, I had to get a portable suction machine, for one if I went home with a trach, then Pamela would need to use the suction machine to clean the tube out. Thankfully, we didn't need it for that reason but with the new tissue in my mouth, it causes my salivary glands to overproduce saliva. I will only be able to swallow some of that saliva so the rest I will need to suction. Your tongue helps to mitigate and maneuver your saliva back to swallow, but I can only partially do this. Yes, I know it's not glamorous to think about or picture but this is reality. It won't be forever, but this is life at the moment. Luckily, the hospital sent us home with the rest of the medical supplies we would need to assist with my care so no need to worry about having to order these.
We arrived home and the kids hadn't arrived yet. At this point in the day, it was time for me to eat so Pamela had to fix my liquid for my feeding tube. I was having my snack and I hear the door open from the garage. The kids walked through and gave us the biggest hugs and kisses. It felt so great to get our family unit back together under one roof. We were able to sit and talk to catch up on the past 7 days we weren't together. Don't get me wrong, while we were in the hospital we would Facetime them every day, but this is the first time they saw me without the tubes and trach.
The first few days at home ran their course without any excitement. On Thursday, I had an appointment at MD Anderson downtown for a Barium Swallow Test. This is a test done under X-ray to see if you have any leaks, you are able to swallow the liquid, etc. We arrived at my appointment and I went to the room for the test. The person I was with said that if I passed my swallow test that they would take my feeding tube out today. Wow, that was big news, but scary as well. I had to drink and swallow different liquids many times for them to determine if I would pass or fail. Remember this is the first time I have swallowed liquid post-surgery. As weird as this sounds, when I took the first liquid in my mouth, the next step of trying to swallow felt so foreign to me. At first, I slightly tilted my head back to get the liquid to the back of my throat. As the testing went on, the liquid became easier to swallow, but it still felt weird. She threw me a curveball and brought me a cup with yogurt in it. I was thinking in my head that they might as well fail me now because this is the first time I have attempted to eat something solid. I took a spoonful of yogurt and put it in my mouth, which in my head I am like just do the same thing you did with the liquid. Nope, I was able to swallow a tiny bit of it and the rest of the time I looked like a dog with peanut butter trying to figure out how to get it down. I couldn't believe something as simple as yogurt would be so difficult. The testing came to an end and she let me know that I passed and everything looked good. They took my feeding tube out and I was free to go home.
My thoughts were immediately from what I had just experienced in that swallow test of not even being able to get yogurt down were, "how in the hell will I be able to eat at home? She said I could eat soft foods, but I couldn't even get yogurt down." As much as I wanted that feeding tube out, there was a part of me that wanted it back in to save me from this disaster I was about to embark on.
The first item that I tried when we got home was a smoothie. After Pamela brought it over to me, I could only get a few drinks down. We think it was because the smoothie was too thick. Now we knew I couldn't have any liquid that was on the thicker side.
That afternoon I decided that I would try mac and cheese because it's soft food. I was so excited to finally eat something normal. I can't take regular size bites of food, I can only eat 1 noodle at a time so that I can maneuver the noodle in my mouth to swallow and not choke. I believe I got to my 3rd noodle after 20 minutes in and quit with frustration. I was so frustrated that a function I have done my whole life is now one of the most challenging things I have ever done. After this, I didn't eat anything else because I was frustrated at the process and myself.
The next day I woke up and started new. The kids woke up and came downstairs so Pamela asked if they wanted eggs. They both agreed and she asked if I wanted some. I paused for a moment thinking about yesterday but proceeded with a yes. She brought me a plate of eggs and I started cutting them into small pieces. I was able to get 4 bites down in a 30-minute timeframe. I passed the plate to Pamela so that she could eat it.
That afternoon I was like why don't I try mashed potatoes because it's soft and I don't have to chew a lot. We made me some mashed potatoes, but I let them sit for a few minutes because I really can't regulate the food temperature in my mouth, so I have to make sure it's not super hot. I take my first bite of the potatoes and it's an immediate flashback to the swallow test. I was trying to move it around to get it towards the back of my throat to swallow but I couldn't tell how much I had swallowed and how much was still in my mouth. I stopped eating it and put it in the refrigerator.
We ended up getting the Naked smoothies because we knew that they weren't too thick. I have been able to drink those for my meals and snacks until I can start building up to solid foods. Granted, this isn't my ideal meal at all, but at least it provides some nourishment to get me through the day.
Losing feeling on one side of the tongue is a huge deal because you also lose the functionality. At this point, feeling defeated is an understatement. Everyone around me is telling me that it's a process and I need to let it run it's the course. I get that it's a process, but I am the one going through this process and it's 10x more challenging than I ever thought it would be. My mind starts wandering and I find myself asking questions of what this does to me. Will I ever be able to enjoy eating again? Will I ever be able to eat my favorite foods again? Can I eat in public and not look like an animal eating? Will it take me a long time to eat every meal? I know there will more than likely be items that I won't be able to eat. I know that I will probably never be able to eat a normal size bite. This seems to be the challenge up to this point that will be the hardest to conquer.
The picture below is of my tongue towards the end of the first week home after being discharged from the hospital. The white markings that you see on my tongue are the stitches. You can see how swollen my tongue is, which makes for a difficult time trying to consume any type of food.