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!
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!