The nose tube’s out; I have two nostrils again!
I stood in place and played Slapjack. Standing is much harder than walking. Much.
I sat up all day enjoying my ability to eat and drink.
Tomorrow I get a smaller trach.
–Reid.
If I can swallow all my pills (previously all given as injections down my nose tube) today, the tube will be removed tonight. Hoo-ray!
Yesterday was a good day.
To start off, I walked further than I’ve ever walked before: from the gym to my room. Much farther than the 30 steps I took the first day I walked! It was great. I felt so encouraged. I felt like I really am getting stronger, which is very nice.
Then I realized what an idiot I am. I set an unreasonably high bar for myself. If I walked that far yesterday, how much farther am I going to have to walk Monday for people to not think I’ve gone soft?!
After PT was my swallow study. For it, I had to sit in this menacing chair called (I am not making this up) “The Hostage Chair”. The Hostage Chair is big and scary AND they strap you into it. But the Hostage Chair is also pink. And while it had wheels, it could only move backwards. It took a ridiculous amount of effort to get me into the chair (thank you Gretchen for not letting me fall and break my ass!), but we finally did it.
Down in radiology, they had the three food items I had selected covered in barium. So there was a powdery blue apple, some soupy blue vanilla pudding, and blue Dr. Pepper. It was a strange sight. I was wheeled into a machine that had a screen in front of it. The screen was a live fluoroscopy feed of my head. Basically, it’s a live video x-ray. It was really cool.
They fed me all of the foods and I got to watch as I swallowed them and they didn’t go into my lungs. As you’ve probably guessed, I passed the test. I can now eat and drink anything I want. I still have a sort of lack of appetite but they’re trying to deal with that by taking away my feed altogether.
I’m particularly excited by this (aside from the obvious reasons) because it will lead to me getting my nose tube out! I have a tube that runs from my nose past my stomach. In the past few months, it’s been used for feeding me and giving me medicine. But it’s been in far past the amount of time these things are supposed to be in. I’m at high risk for sinus infections and all sorts of things. It’s given me a runny nose with mucus running down the back of my throat that’s caused terrible coughing fits recently.
The main reason I want it gone is because I can only advance so far with the trach while the nose tube is in. I can’t be coughing non-stop with lungs that can just barely sustain me.
Finally, Dad and I watched Election, which neither of us had ever seen. We both enjoyed it. It was lent to me by Bradly, a nurse here. We then played Gin Rummy as both of us were falling asleep. It was fun, and a good ending to a great day.
Today: Doctor Brown’s Black Cherry soda.
–Reid.
P.S. Amy’s coming out here in a week. I hope she doesn’t read my blog to know that I can’t walk.
It’s a cold day and I just took a hot shower. That may sound relaxing, but when you can’t stand up and you’re reliant on a ventilator and two people (one of whom is your dad) to give you the shower, it’s not nearly as relaxing as it sounds.
Additionally, the shower is a hand held shower wand. This would be fine except the door can’t be closed because of the vent tubes. So every part of my body except the part being hit by the water is freezing cold.
Both of my feet look like Hannukah hams again. The left one still hurts like the dickens. I don’t know for sure, but I imagine the dickens to be some sort of torture device used by nurses I’ve wronged in the past.
For the past three months, I’ve been getting my nutrition through a tube that goes from my nose past my stomach. In order to get off this disgusting system, I need to show that I can eat enough to sustain myself. So far, I’ve had a lot of trouble with this; I can only eat a bit here and a nibble there.
The doctors decided to stop my “feed” during the day to try to increase my huger. They also doubled the amount of water I receive at night just to make up for what I missed during the day. Unfortunately, all this did was make me have to pee every hour on the hour last night (which is another fun thing to do when you can’t walk, let me tell you).
There’s a swallow study on Friday to determine if all food restrictions will be lifted. Nervous.
Tommy from upstairs started a neat thing on the back of my door. If you know another language, you write out a certain phrase in that language and post it on the door. So far we have 10 entries, including Norwegian, Yiddish, Arabic, and Phlegmish (hack cough ptuie). The phrase is “I don’t want to sleep in this fucking bed of shit!” (“No quiero dormir en este pinche cana de caca!”in Spanish).
Took a break from movies last night and played Scrabble. Had a lot of fun.
–Reid.
Went outside in the wheelchair today. Fell to my knees trying to get in chair. Despite lots of encouraging praise, I was mad at myself. It was a very short distance and I couldn’t make it. Lots of people, including Rabbi Foster, helped me get into the lift and into the chair.
It was beautiful outside, very warm. It was a good feeling to experience the world on that side of the window. Haven’t been outside in a long time.
Walked further than ever before today. Rounded a corner.
–Reid.
We had a “Care Conference” a few days ago, in which the head doctors of each of the departments that are involved in my treatment met up. My parents and I were also there. We discussed goals for my stay here and what has to be achieved before I leave. We made sure we were all on the same page.
Unfortunately, an estimate put me at 6 weeks before I’m off the vent and able to move to the seventh floor. Then, an extended period of rehab after that. My dad momentarily broke into tears upon hearing how long I’d be in the hospital.
I cried for the first time since being here last night. My Aunt and Uncle and I were sitting in my room with the intention of having a conversation. I had my cuff deflated–which alows more air in, and the ability to speak. Almost as soon as it was deflated, a coughing fit started. I was coughing up phlegm for over an hour.
I started crying because all I wanted to do was have a conversation, and this damn phlegm wouldn’t leave me alone. But it went deeper than that. For weeks, people kept telling me how much better and stronger I looked, I didn’t really like hearing this because I didn’t
Today, though, I think I turned over a new leaf. I sat up in bed four times by myself, which means I don’t have to spend the next few weeks
I also walked to the chair. I played Scrabble with my parents, Rachel brought great pictures from NYC and hung them up.
My foot still hurts and my fimgers are tingly, shaky, and hard to a huge.
-Reid.
I can’t eat much, but after all this time, just about anything tastes good. I miss normal water.
Liquids i drink have to be “thickened” with a special nectar. If you’ve ever had anything called a “nectar,” it’s exactly that consistency. I drink mostly juices and some lemon lime Shasta. My favorite drink of the moment is a raspberry-lemonadetini. Which is raspberry-lemonade mixed with Shasta.
I can eat a lot of basic foods like mac & cheese, yogurt, and eggs. As I work with the doctors, I can eat more advanced stuff like spaghetti with meat sauce.
Watched The Three Amigos last night.
–Reid.
I’ve spent the past (my dad just calculate this) 100 days not doing anything. I don’t read, I don’s listen to music, and I’ve only recently stqrtrtred watcching TV. So we’ve started watching movies at night wth my parents and Aunt and Uncle Danny, who have spent abbout 99 days here.
I got a new trach and am able to whisper all the time now. When people ask what the biggest annoyance was when I couldn’t talk, it reply that it was that people would guess the same thing over and over and over. I don’t know if it was Seinfeld, but some sitcom had a great line about that: “If it wasn”t dog the first time, why would it be dog tha 15th time?!”
A lot of my nurses from oncology keep stopping by. They say they miss me and keep tabs on me, I just need ti get off the trach monitor and I can move bsvk up. I’m, excited about this for a lot of reasons.
But it[‘ss obvioudly easier said than done,
–Reid.
This email rook an hour to type AND spellchack.
Part of my PT every day is sitting up in bed and making my way to a chair a few feet away. There’s a cool harness system that can support me while I walk or just lift me over. My dad asked why I needed the harness to walk since in the ICU I didn’t have anything like that. Just a walker (I use that with the harness too).
So for the past few days I’ve not been using the harness. It’s good.
Unfortunately, my feet, which have been hurting for weeks, are now killing me. 10/10, absolutely devastatingly painful. Turns out it’s naropathy–the very thing that makes it hard for me to type. Son of a bitch.
Speaking of my bed and walking… I hate it. Every hour I’m not in this chair, I’m in my bed. That’s over 22 hours in one place. I hate it I hate it I hate it. It”s uncomfortable and they wonder why I can’t sleep. I hate it.
Most are probably spam, but it still feels like a lot of people care.
It is still very hard to type, but I wanted to get some excercise.
Amy, I miss you a lot. It was a great joy to be able to talk to you yesterday.