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Just sharing my (our) journey….

[7captainflyer7]

A few weeks of learning how to eat again. Everything for now is puréed, chicken is o.k., beef, pork, fish is NOT good. So it’s a lot of soup, scrambled eggs, pasta is ok to eat but kind of hard to make. Still sleeping in a sort of upright position, really hard to do for a side sleeper. So lots of switching from the bed to the couch to the recliner. However I’m sure I got more sleep than my wife did during that time.

[7captainflyer7]

I’m home! Now comes the hard work….for my wife! I still think if it wasn’t for her I’d still be in the hospital, a year later. I still have to sleep semi sitting up, so into the lazy boy I go. If I remember right, which has become a chore sometimes, the next day the nurses start coming to the house almost on a daily basis. They come to swab the neck wound, change the dressing on the wrist and make sure my new tongue is getting rinsed with a terrible tasting hydrogen peroxide solution. But hey at least I can taste things still! They check my vitals and keep me up on pain meds as well.

[7captainflyer7]

Well today is the day, Feb 28, 2023. I’m going home! As I said both excited and scared. The surgeon came by with the news! They came by with some breakfast, to be honest I don’t even remember what it was, probably tea , thickened water and some pudding maybe. My wonderful wife and mom packed up my stuff, hugs to some of the nurses and we were off. About an hour later “walking” in the front door. But at least now I was thinking I would sleep better, go to the bathroom by myself, get dressed instead of a hospital gown and watch tv!

[7captainflyer7]

Just going day to day, eating as best I could, getting up and walking around the floor. Did this for the next few days until the surgeons came and said I could probably go home in a day or two. I was really scared of that thought. Having to do all the daily eating and cleaning, rinsing, wound care an so one all by myself. For some reason totally forgetting that my family would still be there all the time. Of course that’s where they have been the whole time, at my side!

[7captainflyer7]

Finally the day came when they took out the feeding tube from my nose. BEST DAY EVER! Then came the task of trying to learn how the eat again. Puréed hospital food is not as delicious as it sounds. Not to mention how incredibly hard it was to start to move a tongue that was 60% from my wrist. My brain was telling my tongue to move but it was not doing what it was supposed to. The next few days were the same, tea, puréed beef on top of puréed green beans (guess what that looks like 💩). They would also add in something called thickened lemon flavoured water or sometimes thickened Apple drink. That was actually not bad and the only real hydration I was getting other than the I.V.

[7captainflyer7]

The first weekend , no doctors doing the early morning rounds, only the interns. They took more time with each person which felt good. The days are filled with walking the floor with the I.v pole and of course the best people ever, my family. There was a new guy in the room around the same time. I felt so bad for him. He went through almost the same surgery as me but unfortunately his wife couldn’t leave the nursing home and his kids had Covid so they couldn’t come visit. That made night time worse as he wasn’t sleeping and also couldn’t talk due to his surgery. I don’t know how often I stood and watched people walking up and down the street aka drug deals or counted the windows in the various apartments across the street. But not to worry the nurses would be back soon. At this point they only came every hour now.

[7captainflyer7]

One of the first people to come was the lady to make a protective brace for my wrist to protect it from getting hit as the new skin that’s there is thin and fragile. Kinda cool to see the process of making one, still nothing some gauze and tape couldn’t do though! Several students and their mentors also come and see me for different reasons, physio, nutrition, mental health. All very professional and genuinely concerned about my recovery first and foremost. My days become very busy,. The good thing is the days fly by,getting up walking around the floor, still having the nurses come for needles and food through the tube and of course my family and friends stopping by for a visit. You would think that with how busy the days have gotten that I would just crash and sleep all night. Not a chance. I’ve never been one to get too anxious about too many things but the third or fourth night I was kinda freaking out about a bunch of things. One of the nurses stopped to check my vitals as usual and asked if I was ok. Now I’ve never told this to anyone but as I tried to say “ya I’m fine” I was getting chocked up and tears started fill my eyes. She said give me a minute and I’ll be right back. True to her word, she was back quickly and sat and talked with me for probably a couple of hours. The whole time she would either hold my hand or stroke my hair. What we talked about, I’m not sure, it was just “stuff”. By the time we were finished the next shift was coming on and she grabbed the nurse who was to relieve her and kinda filled her in on our talk. They are the best! I still get teary eyed when I think back to that night.

[7captainflyer7]

The first few days in the hospital, I was pretty lucky as there was no one else in the room with me so as long as they weren’t loud or in the way my visitors were usually more than the 2 that were allowed. Also my wife and parents usually got to stay a little longer than the 9pm visiting hours. During the first week, most of my siblings stopped by to see how I was doing, apparently work and getting ready for vacation took priority for some. Maybe I’m just being selfish. 10 days into my hospital stay, I got the first and only message from my brother “hoping I wasn’t giving the doctors and nurses a hard time.” Anyways, now the days are coming where I’m starting to get people in start with the rehab. And I also got a new room and roommate now that I was more stable.

[7captainflyer7]

The one thing that I am most thankful for throughout this whole ordeal is the fact that every single day, in the morning right after the doctors round and until 9pm when visiting hours were over at night, my family was beside me! For that I will never be able thank them enough! The days in hospital were actually not too bad, nurse visits every hour, family and friends checking in non stop, new patients coming and going and a lot of support staff helping with recovery and rehab of a lot of skills that we all take for granted. The nights were a whole different type of nightmare. All kinds of new sounds of patients adjusting from their surgeries, nurses being called in every direction and my mind playing games with my consciousness. Lol. Several times I had “dreams” of people watching movies keeping me awake to the nurses having parties and giving out prizes to patients and me not being included. I’m sure there were more but the memory is not what it was. Awake most of the time at night, staring out the huge window counting the number of windows in the apartment building down the street, watching drug deals go down on the street below and then realizing it’s only been 20 minutes. Still about 7 hours to go before the doctors come and only a 1/2 hour before the nurses come back to wake me up for more needles. It’s been almost a year and I still get anxiety over it.

[7captainflyer7]

The next few days/nights were just a blur. The doctors made their rounds usually right at 7am, right around the time I was able to fall asleep…lol. I’m not sure when it actually happened but even today I find this totally hilarious. This is a great story. They gave me a button to use at night in case I needed a nurse in between their scheduled stop ins. Well this one night, my I.V. machine was making some alarm type noises so I reached for the button. So still under the influence of some pretty good painkillers my fine motor skills aren’t working quite up to par and the button fallen the floor. Now keep in mind my clothing consists of a hospital gown, open in the back. While trying to reach around all the wires connected to myself and the I.V. and B.P. machines for the button the gown which has never been tied falls to the floor. Unexpectedly, the most beautiful nurse says from behind me “do you need help with anything?” “No thanks I’m fine, just trying to get the f’n button”, “well let’s get your gown back in place first”, “no thanks I just need the button” that’s when I realized where my gown actually was. So thankful that I’m sure in her profession she had already seen everything there is to see…lol! Ya you probably had to be there. Back to bed, the hourly needles were coming soon and so where the 7am rounds.

[7captainflyer7]

Continuing on, just as everyone was leaving I was trying to figure out how to breath through the tube in my neck with another tube going up my nose and down my throat. All the while still coming out of the anesthesia, coughing and choking, throwing up blood was my next few hours. Once again thanks to the nurses for helping me through it. For the first night nurses were in and out every 30 minutes checking my breathing, vitals etc. also ensuring that the new part of my tongue was getting good blood flow. Needles for pain and to fight infection were also every hour. Several intravenous medications for hydration and nutrition were also constant, all the while being told to “get some rest” having to sleep sitting up so everything drain properly. Being a side sleeper, this is usually next to impossible. One thing kept playing in my head, I need my wife!

[7captainflyer7]

9 hours later, I woke up with my wife, kids and parents at my side! The greatest people in my life. Along with them were the next greatest people in my life, the nurses at St. Joseph’s hospital. In those 9 hours they removed 60% of my tongue and rebuilt it with a vein, an artery and tissue from my left wrist. They repaired my wrist with a skin graft from my upper thigh. The staff was so great they allowed my family to at least see me after the surgery even though visiting hours had been over for awhile. My tongue as so swollen that a tracheotomy was necessary for me to breath for the next few days at least. Also a feeding through my nose was also put in while I was out. For some reason I always forget this but they also opened me from ear to ear on my neck and took out 80+/- lymph nodes. More to come from that first night.

[7captainflyer7]

The room we went into was incredibly warm and cold at the same time. Lights were everywhere and very bright. I thought to myself that this must be the light that everyone follows☠️☠️☠️ suddenly I was even more frightened. So thankful that someone talked to me and I was able to focus on something else. The anesthesiologist started telling me how things were going to progress once the drugs started flowing. The nurse was now sitting on a stool and still holding my hand❤️. Obviously I don’t recall the next 9 hours as they performed an incredibly complex surgery. It must have been hell for my family. I can only imagine. I remember telling the anesthesiologist I was just looking forward to 9 hours of uninterrupted sleep….lol

[7captainflyer7]

Still trying to be the strong one, I kiss my wife and, tell I love her and will see her soon. I head off with the nurse and she takes me to the surgery prep area. After putting on the gown she gets me on the surgical gurney and take to meet the anesthesiologist, I think she sees the fear in my eyes as she says she will stay with me the whole way. She holds my hand as the anesthesiologist explains what will be happening in the next. We all go into the operating room and I start to get hooked up to a bunch of machines that will be with me for the next 2 weeks!

[7captainflyer7]

Feb 14th, 2023. ❤️So here we are sitting in the pre op waiting area with about 20 other patients and their support people, almost 7am. I’m looking around wondering how many are going for surgery or maybe just a small procedure. Being in the downtown Hamilton section there are ALL kinds of people. Well off, middle class, low income, in here we are all the same. They call my name….time to go.

[7captainflyer7]

That night our best friends made a beautiful home cooked meal for us at the Airbnb. Delicious, even though I was having a hard time eating anything at that point. We all talked for awhile, probably pretending that nothing was wrong. They left us for the evening to be together, as a family. Relying on each other’s strength to get us through the night. 6am was going to come fast enough. Even though the hospital was only about 2 blocks away the kids insisted on driving us to the check in desk.

[7captainflyer7]

Lots of emotions over the next several weeks, waiting for THE DAY. Kept working hoping it would take my mind off the surgery, sometimes it did but most of the time it didn’t. On the 13th our kids, my parents and our best friends drove to an Airbnb a couple of blocks from the hospital. That’s where everyone would stay for the next 2 weeks. A special thanks to the owner for graciously extending their stay day to day, definitely made things easier for them and in turn for me as well.