Yesterday, Cheryl, Cousin Bill, and I headed back to Houston for another evaluation. This time it was to see how my eating and drinking was progressing following surgery.
We had a 1:00pm appointment, so we headed out at 8:30am. That gave us enough time to make the required Kolachie stop in La Grange! Of course, I could not stuff one of those into my feeding tube, so I waited for them to get their fix, and we continued on.
We made it to the hospital in plenty of time. Even considering the tail end of Austin rush-hour, we still made it in three hours. (BTW, we checked when we got back home, we have done this 28 times so far! Yikes!)
Since we had time, we headed over to the cafeteria so Cheryl and Bill could have lunch. I sat there with my bag of liquid lunch (some kind of Ensure knock-off) hung on a pole attached to the wheelchair I was using. I am getting much better at walking, but Cheryl did not want to take a chance on me having problems walking around M.D. Anderson, so I rode around instead. Eating through a feeding tube is boring. Especially when the other two were dining on pulled-pork sandwiches or cheeseburgers! Talk about hard to watch!.
I sat there for the hour or so it took to get most of the feeing tube goo into me. I did a bit of people watching, always interesting at this place. The most memorable thing I saw was a skinny little lady polishing off and entire hamburger in three bites! I bet she could have given that hot dog eating king a run for his money!
Fu Speech Pathology
My appointment was in the FU Speech section of the Head and Neck center. I have no idea what FU means, but these folks handle swallowing and speaking issues. Dr. Little, the lady we saw following my swallow test a couple of weeks ago, wanted to see how I was progressing in my ability to eat and drink normal foods. I brought a squeeze bottle full of my favorite A&W Cream Soda with me, and she was pleased to see that I could drink that with no difficulties.
During my last visit, any light fluids was a bit difficult for me to swallow. That means I have made significant progress.
She handed me a cup of fruit pieces to see if I could chew and swallow that. I tried the peach chunks, and managed to get them down without help by drinking something. She was very pleased with this, as I had problems getting a lot of things down earlier.
Dr. Little told us she was amazed and pleased with my progress, and probably could ditch the feeding tube! Yeah!. Before she did that, she called over to the plastic surgeons office to verify that they had not problems with that. After they concurred, she told me to sit up straight and look straight ahead. She snipped the suture holding the tube in my nose and started pulling on the tube. I could feel it climbing up from my stomach. It was uncomfortable, but not overly so. It was out in about 10 seconds. That part was fine. When she reached back in to pull the suture out, it hurt enough to be a surprise. Once again, only for a moment.
Progress
So, we did what we hoped we would do on this visit. We got rid of the last remaining artificial gadget attached to my body. I am free again.
We went over nutrition requirements again. I still need a lot of calories, and protein to heal properly, and now, I am going to have to get all of this normally. That means I have to drink about a six-pack of Ensure each day, plus augment that with normal foods and protein powder.
My biggest problem at this point is the simple fact that my mouth leaks! The "flap" that Dr. Yu put in to cover the new jawbone is still swollen enough that my lips do not come together. So, any thing I put in my mouth rapidly tries to escape through that opening. It can make quite a mess. I have acquired a habit of putting something in, closing my mouth and sealing the gap with a finger before trying to deal with the food or drink. I am using a squeeze bottle to drink fluids. That lets me push the fluid to the back of my mouth before it dribbles out. I have time to get my finger in place before swallowing.
Life certainly is different now!
Dr. Little told us to watch for signs that things are going the wrong way when I eat or drink. If you get the wrong stuff in your lungs it can lead to a lot of coughing, or even pneumonia! I have not seen any signs that this is an issues, but we need to watch things!
Before we left, Dr. Little talked about my speaking issues. Cheryl has been telling me I am hard to understand, which is frustrating when I hear myself just fine. The problem is that the entire left side of my mouth is acting differently now. Normally when you speak, your soft palette moves to seal the opening to your nose. That makes all the air from you speaking go out through your mouth. In my case, the right side is working fine, but the left side is not. I have a lot of new skin on that side, and the result is that I am not sealing the airway to my nose on that side at all. I hear me just fine, but others hear a more nasal version. That has been going on for quite some time, but it seems worse after this last surgery. We talked about getting a dental plate installed to seal off that side, and that is something we will explore after the next surgery, which will make a few more changes in my mouth!
Back to Austin
The entire visit with Dr. Little was less than an hour. We found our way back to the parking garage, and headed back towards Austin.
We decided to stop at a Loves gas station outside of Houston for a break and to get me more Cream Soda. That stop was interesting. Bill came back to the car with a bag of Cheetos, which he opened and started to chomp on. Bill was sitting in the front seat, ans as he ate his treat, a black bird flew onto the rear view mirror on the side of the car close to Bill. The bird had bright yellow eyes, and they were fixed on Bill and those Cheetos. I suspect he has done this before! A stare-down contest ensued, and eventually, Bill caved in and opened the window a crack and offered the bird a Cheeto. The bird flew up to the glass, snatched the Cheeto, and flew away with his prize.
Cheryl returned and as we got ready to leave, the bird was back. A second contest ensued. Bill was not going to lose this one, but we convinced him to give another Cheeto to the poor starving (hardly) bird. As he snatched this second Cheeto, one of his buddies saw an opportunity and swooped into the scene trying to seal the Cheeto. As we pulled out, they were fighting over it.
Phew, what a battle. I suspect that goes on all day at a place like this. Once these birds learn this trick, they will work it all day!
We managed to get back home in three and a half hours, mostly due to the fact that we got to Austin right in the middle of rush hour.
Back to More Normal!
So, we are back home again, and I do not have to deal with that stupid tube running out of my nose. That thing was driving me crazy. Every time I would move, it would pull on something, which hurt. I did not trust anyone working on the tube to set up my feeding stuff not to pull on it, so I held it as protection. I had to pin the end of the tube to my shirt when it was not in use. It was a constant source of aggravation. Now it is gone. Great!
I now have a bigger squeeze bottle for the Ensure/Protein mix. It takes a long time to get that down, but that is going smoothly. I am now free to experiment with other foods and work on getting back to normal.
My vision is still not significantly improved, but I do feel it is a little better. I an scheduled to take that field of vision test in a couple of weeks, and that will tell us more. In the meantime, Dr. Martin, my GP, has me on an aspirin a day program to see if things improve. I am also taking a cholesterol medicine to bring that down as well. Hopefully, these things, and time, will make things improve, and prevent anything from making things worse!
Driving
I did try driving in my neighborhood, and it went pretty well. My normal habit of scanning the area in front of the car meant I could see everything fairly normally. I might just be able to drive after all. I do need to try this at night, though. I do not see as well as before this event, but my own testing seems to say it is not as bad as it was initially. The field of vision testing will tell us more.
I am sitting at home now, on Family Medical Leave Act time off. That protects my job while I recover, but I may run out of sick leave and end up on unpaid leave. My school has a leave pool where folks can donate unused sick leave, and I may tap into that if needed.
When I go back to work is something my doctors are thinking about now. We go back to visit them on March 2, and I have another CT scan scheduled on March 9.
More Prayers!
This journey continues to be hard on all of us. While it is very encouraging to be making progress, we always have that cloud hanging above us. Every time we head off to Houston we do so with mixed emotions. Grateful for being able to go there, and fearful that things might not be going the way we want. Still, we have done this for over eight years, now, so we are blessed in that!
We really do appreciate all the support we get from family, friends, and even strangers! This is a hard journey, and all of that support really helps.
God Bless you all!
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