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BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
3,000
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
Well here I am back in my own bed again after a shortened trip to Edmonton. It was supposed to be most of 5 days with a consultation with and ENT doc on Monday and then clinic on Wednesday (have to fit the doctor's schedules no matter how hard on the patient) but after one night in the supposedly handicap friendly hotel room I had to come home. The room was very nice but the toilet was too low and the seat was so huge I felt like my skinny butt was going to fall right through! The bed was very comfy but being a regular bed once I was flopped into it I was unable to move or get up without help. Anyway the room was big so there was lots of room for my powerchair and it had a nice big flatscreen tv but it's still nice to be home in my own bed.

We made it to see the ENT and after he examined me and shoved a endoscope up my nose (up periscope and booger torpedoes away!) to look at my larynx he said that he thought that a trache would be the way to go for me. I asked about a laryngectomy and he said that a trache would be a better choice for me because of the easier operation (45 minutes rather than two to three hours), the laryngectomy would totally take away my ability to make any vocal noise at all (those oh so endearing grunts that drive Beth crazy) and I would lose my sense of smell.

So he said "how soon"? I said "soon", he said "we can try to get you in next week" and I said "good".

We left there and phoned the clinic to tell them we couldn't make it on Wednesday (tomorrow) and could we do it by conference call (all we do is talk anyway) and to let them know that we will need a ventilator to replace my bipap (for sleeping as I still breathe pretty well on my own during the day). The clinic nurse told Beth that I may have to wait until a ventilator is available so probably not next week.

Anyway, we will see what the doctors say tomorrow, Beth just told me that we have a Tele-health video conference arranged for tomorrow morning at ten. All we have to do is go to our local hospital and we can talk to the clinic Respiratory Tech, the Respirologist, the head neurologist and whoever else.

I feel like Commander Keen in the video game "Aliens Ate My Babysitter" as I am about to advance to the next level in this ALS game.

Level I - Geez I sure do talk funny! Where's my communicator?
Level II - Damn I can't eat anymore, time to go (peg) tubular!
Level III - Why is this floor sloped? Time for wheeled support!
Level !V - Drowning on dry land, time for a snorkel!

Anyway more of the saga later! Stay tuned!
 
I wish you the best. All these hard decisions we have to make. I hope it works well for you.
 
Well hello there - yup those handicap rooms sure are something aren't they. Designed by someone who has never had a sniff of life limiting conditions I long ago decided. Have to say I was in admiration of you planning to stay several days. Last time I used one I took a commode to put over the toilet! Now they are a no go because the beds aren't suitable for use with a lift. I tell you there is a serious gap in the market there. (Think of the money to be made in offering holidays to those using advanced computing & pwcs)

Hotels are nothing compared to the endoscope though - no this won't hurt, what, did I forget to spray you with numbing antisceptic first - whoops

On the other hand I really like your conference call style. Now that is the way to go!

Sounds like your decision is made on the trache. Whenever we've made a decision here we've been glad when it could be done quickly so I hope that tomorrow you are able to fix a date for next week and I look forward to hearing good news on that front.

Mum has said no to level IV of the game plan so we are here with our fishing rod (yankeur) and floatation device (meds) - you know the score. Happy for her that she is ok with the game plan.

Again thanks for the update - had been thinking of you and wondering how you were getting on.

Rooting for you! Sending hugs to you and umph to Beth (for groan interpretations!)
 
I love Avril's style of rooting you on, Barry! And your sense of humor...good thing the endescope up the nose didn't reach that! I am wishing you very well in this next step. It will be wonderful if you can be "gob--less" and "gunk-less" in your breathing. So very good to hear from you.
 
hi barry.
wishing you all the best with your trache procedure,will keep you in my thoughts and prayers.
so good to see you still have that wicked sense of humour................i admire you so much for that.
(((hugs)))caroline
 
Hope all goes well Barry. Just make sure that your gorgeous legs are not affected ! You are an ispiration as always
aly
 
Hi Barry,

Thanks for the update. It's an interesting way to keep in touch with forum friends via updates and we so appreciate hearing how you are doing. Sure thinking of you since Joel's passing. Seems you two had quite the bond and what a pleasure he must have had meeting you and vice versa. We'll pray for a great appt and great care as you conquer level V!

Marie
 
Barry I love your attitude. I wish you the very best in the coming weeks. Thank you for making me smile.
 
Hi Barry,

I love the way you tell the story. So, when you went in there, did you think that getting a trache was on the agenda? Sounds like this was quite a surprise but that you "rolled with the punches" pretty well.

I pray that this puts an end to all your misery you've been having with the coughing/choking episodes and all.

Keep us posted!

-Tom
 
Proud of the way you are handling all this, Barry.
I hope it works well for you.
 
Barry you do have the best attitude. You have a way of making the bad sound ok. I hope it goes well!
 
Barry,

So glad you're a man with a plan 8) I find you inspirational in your attitude. Hope the wait is not long, you know how it is, once a decision has made, its time to get on with it already, right?
 
Actually I'm scared shitless but I'm going to have to have help suctioning soon no matter what I do so I think it's best to make it a no stress experience for everyone. We'll see what the clinic docs have to say tomorrow. Thanks for all of the support everyone, I appreciate it!
 
Thanks for the update Barry! Please know that you have a whole forum family sending positive thoughts your way.
 
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