Updated: Aug 2, 2020
Since my surgery was extensive, they had me stay at the hospital for 7 days. Pamela had to be admitted to the hospital with me in order to stay, but she had the ability to leave at any time. If she left, she wouldn't be admitted back into the hospital. COVID changed the hospital rules tremendously, you were not allowed to have anyone stay with you or any visitors, but since I wouldn't have the ability to speak, an exception was granted. I am so happy that we made the decision to have Pamela be there with me, because not being able to speak, she was quickly able to pick up what I was throwing down.
We were on the 22nd floor, which is MD Anderson's head and neck floor. The room we were given was a lot bigger than I expected and we had a straight-line view of Downtown Houston. For being in a hospital, the view was pretty amazing. My doctors let me know that the first 48 hours would be the most crucial on the flap being accepted. Because this was the most crucial time frame, I received the VIP treatment. This consisted of someone checking my flap every hour. That is right, EVERY HOUR. On top of that, I received breathing treatments every 6 hours, to help prevent pneumonia. And to accompany the breathing treatments, I had to have my vitals taken every 5 hours. Let's just say that the VIP Package leads to a lot of sleeplessness for the first few nights in the hospital.
After a surgery like I had, you are not able to do very much on your own. I wasn't able to do the easiest tasks by myself that I had done everyday like go to the restroom, wash my hands, take a shower, get out of bed, and so on. Pamela was a rock star because she had to help me with every aspect of this. There are so many things that are taken for granted when you can't even do the smallest tasks you were used to, however when you are able to do them on your own, these are HUGE victories in my book.
I would have to say that the first 3 days in the hospital were by far the hardest. The swelling in my mouth continued to get worse which prevented me from being able to close my mouth. The doctors told me that the swelling probably wouldn't start to reduce until day 4. Before my surgery, the pain from the lesion in my mouth was becoming more painful each day. I would have to say that the pain, at that time, on a scale from 1 to 10 was probably about a 7 or 8. After the surgery, with all of the incisions I had and so forth, my pain level usually stayed between a 2 and 4 on a scale from 1 to 10.
On the 2nd day, I had different visitors coming by my room all day. The doctors did their rounds, physical therapist, occupational therapist, breathing treatments, medications, feedings, and so on. The one thing I remember about one visit we had with the occupational therapist. She went over a ton of information about how to ease back into life post surgery. We were close to the end of our visit and she said "Quick question, have you looked at yourself in the mirror?" I had let her know that I haven't looked at myself yet. In my head, the reason I didn't want to look is because I was afraid of what I would see. Pamela had told me that it wasn't bad, but in my head I am thinking you are my wife and supposed to say that. That evening I had to go to the restroom, so Pamela had to help get there. I finished and went to wash my hands with my head down. She asked do you want to see and I said no at first because I was scared. After we washed my hands, I motioned that I would look. I lifted my head up and looked at myself in the mirror. In my head the first reaction, who in the world is that guy. This doesn't look like me. That first time looking in the mirror is a punch in the gut reality check. I kept looking at myself in the mirror everyday in order to become confident in my appearance.
On the 2nd night in the hospital, the nurse came in to give me my medication around 3 am. She was trying to administer the meds through my feeding tube, but she was getting a lot of resistance. She went and pulled in another nurse to see if she would have any luck, which she didn't. At this point, they let me know that my feeding tube was probably clogged, so I would need it switched out. Around 7 am the resident and fellow came by, the nurses let them know that the feeding tube had clogged. The floor didn't have a new feeding tube ready, so I had to wait for them to get one in and come back to switch out. Finally, around 3 pm the resident came back, he tried to insert the feeding tube, but it kept going down my airway. He tried 4 times and at that point, Pamela said to not try again. He left and about an hour later came back with the fellow. I was so exhausted from the coughing and straining every muscle in my body but the Fellow said she was going to attempt the feeding tube and she nailed it the first try. I was so RELIEVED.
In the picture below, this is me attempting to make a funny face to send to my parents to let them know I was doing alright.
The next morning I woke up and my throat and ear were hurting so bad. Every time I swallowed, it felt like I was swallowing nails. We have a feeling that my throat had been irritated or scratched from the feeding tube being inserted and taken out so many times. Day three is the day where my anxiety was at its highest point. My tongue was so swollen so much that I couldn't close my mouth at all. I had to sleep at a 30-degree incline with my head immobilized to keep it from going side to side, and there were so many people coming in and out of the hospital room, I felt like I had to find a way to burst out of the room.
The flap had to be checked every 1 hour for the first 2 days, then it went to being checked every 2 hours, then every 3 hours, and then finally every 4 hours. The flap check was the only piece of my hospital protocol that changed. Everything else remained the same.
I had to walk at least 2 to 3 times a day to keep my blood flowing, and I did not mind it because it was like an escape for me. I told Pamela that these were like our walks down the beach, in the park, and under the moonlight backdrops. These would become our routine and would give us a break from being in the room.
I know most haven't of you haven't had a trach, but let me tell you how uncomfortable they are. Since I was breathing through the trach, if it became dirty, they would try to suction it out or they would have to replace it. When they had to replace it, that wasn't too bad because it just felt like pressure on my neck. There were a couple of times that it was clogged and got dirty in the middle of the night and it made it incredibly difficult to breathe. At times like that, I couldn't imagine not having Pamela there to help get our nurse in the room.
Out of all the days, I believe our favorite day in the hospital was on Sunday. During the week and on Saturday, we had Doctors, Nurses, and Therapists (could be a song) in and out of our room constantly so we were both exhausted. On Sunday, we slept and just laid in bed because we didn't have hardly any interruptions except for the breathing treatment, our nurse checking in on us, and occasionally vitals. We did get out and have our romantic walk around the unit. On Sunday evening, we ended up going to the lookout area in the hospital. From that area, you can see all around the outside of the medical center and beyond. We went in the afternoon, then decided to go back later that evening.
I guess I was special, since I had the trach, I had to wear a mask over my mouth and the trach. Thanks COVID!!!!!
Walking around the floor, we had noticed that we were by far the youngest people there. The majority of the people on the floor looked to be 60 and above. Everyone would tell us that they couldn't believe how young we were. Pamela and I have nothing but love for all of the healthcare workers out there. Our nurses on the floor were absolutely PHENOMENAL! Everyone was so nice and helpful tried to make our stay as comfortable as they could. The care that we received at MD Anderson was top notch and I couldn't imagine being anywhere else for this fight. I couldn't talk but I would try to be funny or have to write it down and by that time the punch line would hit it wouldn't be that funny. What can I say?
It was pretty neat that a lot of our nurses from days prior would come back to chat and check in on us. We could hear a few of them after they left our room, saying that we were their favorites. That was a pretty special moment for us because we aren't ones that want to be difficult. Even in this type of situation, we were joking around with the staff and keeping it light and bright. They have their plates full, so if there was anything we could do to make it fun, we tried.
Monday was a big day because I was going to have my trach capped off to see if I could breathe on my own. The previous night, Pamela was said "You better breathe on your own because I am not taking that home to take care of." The fellow and resident came by around 7 am to change my trach to a smaller size and cap it off. When they capped my trach, I immediately was able to breathe. It felt so good to be breathing normally through my mouth and nose. Pamela was so relieved after that as well because she was going to be doing so many other things that we were glad we could take this off the list. She learned how to feed me and administer my medication through my feeding tube. She was becoming an expert caretaker. At this point, we realized we are at the home stretch of being able to go home and we were both definitely ready.
The picture below is of the incision that was made for the trach with the dressing on. The incision will heal and close on its own, but you need to change and keep dressing on it. If you want to speak, cough, sneeze, etc, then you have to press your fingers on the dressing to keep the incision from opening so that it can heal close.
This picture is the incision without the dressing.
The picture below is the incision they made on my neck. It follows my jawline, which makes it hard to see.
Tuesday comes along and my trach is taken out, so we are ready for DISCHARGE DAY!!!! We woke up with a new skip in our step because we are getting to go home, see the kids, and relax. Everyone came by to do their visits with us and that afternoon we were able to go home.