There Are No Words: Tubular

2015.08.01

I posted quite a few times on Saturday, despite my calendar being devoid of tests and such.

I was in good spirits even though some of the events were pretty scary at the time. I don’t know when I woke up, but at 9:46AM I wrote:

"I don't see how that's a party." - Black Widow (Avengers)
Last night was mostly unpleasant. First, some terminology from Wikipedia: A tracheotomy tube consists of an outer cannula or main shaft, and an inner cannula. The outer cannula remains in place but, because of the buildup of secretions, there is an inner cannula that fits in the outer cannula that is removed for cleaning or replaced with a new one instead of changing the whole outer cannula. It also has an inflatable cuff (balloons at the end of the tube) to secure it in place.
I'll be calling these the outer tube and the inner tube, because I want to go white water rafting.
The RT (respiratory therapist) was very good, helping get things to a point where I could be pretty comfortable, but that inner tube was real trouble last night. Some time early this morning - 4 or 5 AM I think - it was almost completely blocked. The nurse took it out, but couldn't get a new one in. The RT came over and did it - and then I was desperately trying to get any air at all. Immediately after the new inner tube went in, I coughed up a fleck of surgical detritus - some dried blood, I guess - that almost completely blocked the tube. I'm glad my RT was there - she had it out, and a new one in in a jiffy.
Now I'm breathing easily through the tracheotomy. My day-RT has deflated the cuff, so goo can travel past the tracheotomy - but so can air. If it gets clogged again, I have an alternate airway again. She also taught me how to take out the inner tube myself too, just in case. It's a bit tricky to do with fat fingers like mine, but if I need to I can do it.
At this point most of my discomfort is in my back between my shoulder blades: that part of my back always seizes up, and sitting for a few days is ouchie. Oh, and my ass feels like someone has been paddling it. (As that isn't my thing, I have to count that in the unpleasant column too. This is why 'do unto others' is such a terrible rule.)
I'm going to see if they can up the calorie count on my meal slurry (I'm hungry all the time). I've asked them to adjust the pain med schedule (more frequent, smaller doses) too, so I have more pain free time and less stoned time.
Right, that's the morning update. I'll be out of it for a while again - next round of painkiller is on the way. I hope you have a great day.

Choking on that fleck of goo was very unpleasant. Tamara and I had a little back and forth:

Tamara: Thinking of you. It all sounds very uncomfortable. Very impressed with your presence of mind in documenting and sharing the whole experience. I hope the feedback is giving you what you need.
Julian: I just had another round of drugs, so we’ll just see about that ‘presence of mind’ now won’t we. :) Having lots of people to chat with is wonderful. I’m not lonely in here, even when there’s no one around - and that means a lot.
Tamara: Good to hear, Julian, that you’re feeling supported. I love FB for that. I know there are issues around privacy and what not but for me the benefits of easy connection with a wide community is worth it. Stay well.
Julian: Privacy is a something I’m generally quite concerned with too, and it’s one of the reasons I don’t use facebook that much. This is a case where I’m looking for an opposite of privacy though, so it seemed the best platform for the job. (Note: opposite as in sharing, not notoriety or infamy or publicity.)

Paul have me an update on my little girl, of in Norway:

Not very funny. Great party at Stokkøya last nite.. Livé was in great form. She crashed for two hours, then got her second wind....
Keeping our fingers crossed.

At 11:05AM I posted about making progress managing my care. The ICU staff have a lot of discretion to adjust scheduled for medications and deliver years like coffee in the feeding tube.

Did you know?
- Hot coffee goes down a feeding tube just fine.
- Bedpans are ...tricky. Also, what the heck do women use? No, I don't want to know and I'm not looking it up. Just idly wondering while stoned.
- My calorie count has been upped. Yay! More slurry! Also, don't call it Soylent. 
- Drugs. Mmmmmm.
Sleepytime now.

The drugs were still making me doze a fair bit. I read some comics on my tablet. At 1:30PM I continued the lessons:

DID YOU KNOW?
If someone offers to give you an extra orifice or two politely turn them down. Flee or defend yourself if required. Exceptions to this general rule exist of course; if the offer is phrased "I'm going to put a hole in you and kill you" it should be dealt with differently than "I'm going to put a hole in you to keep you alive." Nuance. Just saying.
DID YOU KNOW
They said I could use a bedpan or a catheter, and I said "You just gave me a brand new hole and the first thing you did was put a tube in it. I think I'll keep the old tubes free and clear, thanks."
DID YOU KNOW
Touch typing is a spectacularly useful skill?

I didn’t have a text to speech system set up yet, and to be honest I don’t recall whether I could vocalize at this point or not. I know how great it was to be able to rapidly type answers while the tablet faced my conversational partner.

This was the day I got to take a shower.

I know how dogs feel when they see the leash. I GET TO GO FOR A WALK WALK WALK YES WAG WAG ARRROOOOOOO! (2:45PM)

That was because my ICU nurse had offered to help me take a shower. If I’d had a tail to wag, it would have been a propeller at that point. I won’t write about the shower yet because that was a post on a later day.

I sure did feel better after that shower. I haven’t written about it yet because it was pretty disgusting as well as being very relieving. I’ll get to it eventually.

That story opened the door for some more colorful sharing of intimate and embarrassing stories. It took a while to write. I was trying to set a tone that was vivid, but also light-hearted. I think part of that came from a comment from an old friend:

Mary: I’m so glad they didn’t remove your sense of humour. Seems like they just enhanced it with the drugs.
Julian: I’m pretty sure they’d have to remove everything inside my head to do a full humour removal, so we’ll aim to avoid that one. :)

I was light-hearted but was aware that it might be hard to believe. I had several private conversations underway with family and friends, offering support but also wondering how I really felt.

I ended the day’s posting at 3PM with a selfie.

All I’m saying is, when you got it, you got it.
(That isn’t a weird sprig of hair atop my head. I don’t know what it is, but I think it is hilarious.)

Michael’s comment on the picture was probably my favorite:

WE ARE THE BORG. RESISTANCE IS FUTILE.

2016.08.01

Today is a beautiful holiday Monday in the Beach, so we spent much of it cleaning and organizing and tidying. I culled and reorganized my closet, and now have a half metre tall stack of t-shirts to give away. A few shirts are going to find new lives in Livé’s build-box. (That’s our personal maker space in the basement, with stuff to do experiments, odds and ends, fasteners and glues and so on.) Mom did a bunch of my paperwork — because I find it incredibly difficult to do and need the help, despite being (by most accounts) a grown up.

I am a bit sad today, but having family around has helped. Uncle Clarence and Auntie Muji are here visiting, and came over with Uncle Donald and Auntie Chris. Soon Livé will be here while Holly beats the stuffing out of Anita and Julia (her niece) on the golf course. Marta is on her way, and we might see John and Christine, too. A full day!

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