Lymphatic Malformation Surgery Chronicles - Tongue Reduction pt. 3

Surgery Day

There is no doubt I was pretty nervous on the day of my surgery but I know it was for the best. My doctor, Dr. Joseph Edmonds (in Houston, TX), is originally from Kansas City and so I thought I would wear my Royals hat to the hospital. I figured it’s better to have the doctor that is going to operate on you in a good mood before he starts, right? By the way, the reason I have a Royals hat is because I collect MLB hats and I’m not far away from having every hat in the league.

At the hospital, (Texas Children’s Hospital in the medical center in Houston), I remember having the hospital gown and my hat on as we met with the doctor before. He talked to my mom and dad and just like before any surgery, my mom had to threaten Dr. Joe, that he better take care of her baby. He is totally cool with that threat by the way! And, we’re all happy to say that he has come through with flying colors every time.

Of course the last thing I remember before the surgery was putting on the gas mask and counting backwards. I know that didn’t last long. The next thing I remember was waking up and seeing my mom and dad and being in a lot of pain. This photo is me sleeping in recovery:

My mom and dad tell me that the surgery took about 2 1/2 hours and while they were in the waiting room with my grandparents, a good friend that works with my Mom came by, Dr. Sterchy, and she brought a care package for my parents and grandparents while they nervously waited. Love you Dr. S!

My parents also told me that Dr. Joe came in to talk to them right after the surgery to tell them what a success it was and that it could not have gone any better. He described to them what he did: they cut a 3.5 mm strip out of the middle of my tongue and sewed the two sides back together. My tongue was 7 mm wide and now it was half the width. They also cut 1 mm off the tip. My dad wants me to say here that it’s important to remember that the surgery was not to get rid of the lymphatic malformation, but to reduce the size of my tongue, so when the lymphatic malformation makes my tongue swell up, that my tongue would stay in my mouth.

Dr. Joe also showed them a side-by-side, before and after picture. My dad is trying to find that picture but is having a hard time. So when we find it, we will post it.

The next few days in the hospital are kind of a blur to me. All I remember is that I was in a lot of pain and the pain medication that I had to drink burned my tongue so bad. My parents tell me that the reason I had to drink the pain medication after a while was because when I went home, that’s how I was going to have to take it. So the morphine coming from the IV was eventually turned off and I had to drink the nasty pain medication. I was also not able to swallow a pill yet.

I would play with something to keep my mind off it but then pass out from the meds:

I liked when my sister, Sadie came to visit me:

The best things were getting popsicles and eventually a milkshake. Obviously those were super soothing and to this day, when my tongue swells up, those are some of the best things to help with the immediate pain...temporarily.

THIS WAS A VIDEO MESSAGE I recorded from my hospital room for everyone that had been praying for me.

I wasn’t allowed to leave the hospital until I was only drinking the pain medication, eating yogurt and walking around on my own. It took a few days but I got there eventually.

I was so happy when it was time to go home and I know my parents were too. I wore that same signed Jason Castro jersey leaving the hospital that I had gotten the day before my surgery. Here’s a picture getting wheeled out of the hospital:

It was a rough recovery time, which my doctor warned us about, but I was so supported by family and friends and I agree with my parents when they say that it feels much better to be at home than in the hospital.

It was not always easy to keep my mouth closed as I healed:

My friends and teammates made feel so special with a lot of get well cards, notes, balloons and my "bulldog mentality" pup!

My dad had gotten four tickets to the Astros game for July 12th, which was just 9 days after my surgery. We weren’t sure if we were going to be able to go because I wasn’t sure if I was going to be feeling good enough, but I REALLY wanted to go. I was very weak as I hadn’t eaten any real solid foods yet, but from a pain perspective I was feeling good enough to go, so we went and I took two of my friends with me. Here is a picture.

You can see in the picture that I am holding… Yes, they are… French fries!!!. This was the first solid food that I ate and I was really scared because I was super hungry (obviously) and the smell of food in the ballpark is like nothing else...especially when you haven’t eaten in 9 days. I really wanted something, but I didn’t know what to try and my dad suggested french fries. I tried them and I was able to eat them! I was super happy! I was also really happy that I was able to share that game with my friends and do something somewhat normal after a week of not having any fun at all.

It was really soon after my surgery, while I was still recovering, that I realized how grateful I was for going through with the surgery. When the swelling went down from the surgery I could tell the difference in my mouth big time! I had so many episodes before the surgery where my tongue would swell and I couldn’t keep it in my mouth and it was so uncomfortable! My tongue would scab up and be painful and I couldn’t eat and sometimes barely even drink through a straw or TALK! Now, when my tongue swells, I’m able to eat and drink even though I have discomfort and I’m in pain. I AM able to speak when I’m swollen now but sometimes I don’t want to because of the pain or discomfort and the way I sound.

It’s been 6 years since this surgery and it definitely changed my life for the better and I am so grateful for my doctor, my family and my friends.