Great blog! You summed up the day perfectly. I know what you mean about being more self conscious around kids. With me it doesn't have to do with family but with any kids. Maybe it's because I'm not around kids alot. I love kids don't get me wrong but they just are much more upfront than adults.
Mark
From: Chris <chriswebb2007@...> To: Duchenne_MD_Support_Group@yahoogroups.com Sent: Monday, December 22, 2008 1:03:05 PM Subject: [Duchenne_MD_Support_Group] New Blog Post - 12/22/08
Im glad you had a good time. You are lucky to have a family that gets along so well. Have a great holiday and a Happy New Year.
Audrey
To: Duchenne_MD_Support_Group@yahoogroups.com From: chriswebb2007@... Date: Mon, 22 Dec 2008 20:03:05 +0000 Subject: [Duchenne_MD_Support_Group] New Blog Post - 12/22/08
That must have been a horrible feeling. Thank God your caregiver heard you. Im glad they were able to get the backup fast without any problems. Thank you for sharing this information with us.
Audrey
To: Duchenne_MD_Support_Group@yahoogroups.com From: nodakwheeler@... Date: Thu, 18 Dec 2008 20:56:36 -0800 Subject: [Duchenne_MD_Support_Group] Scary situation
This morning I had something unexpected happen that scared the hell out of me. I hate to even think what might of happened but I figured I better warn other LTV users.
Before I begin, I want to give a bit of background on my respiratory setup. I use a safety strap (made from another trach tie) that velcroes to my trach tie and it keeps the ventilator circuit from popping off. It has worked well for the nearly 6 years I've been trached.
This morning about 6:00 a.m. my vent circuit popped off very slightly and it was still held on by the safety strap. I wasn't getting any air and to my horror the vent (LTV 800) wasn't alarming. My caregiver was fortunately awake enough to hear my distress call of clicking my tongue against the roof of my mouth. She raced in and reconnected to my vent. Needless to say I was really shaken up by the whole ordeal.
I contacted my DME and they had no idea why that happened. I requested a pulse oximeter be ordered and they totally agreed with me. My doc got the script to my DME and they brought it out tonight. I'm relieved to have this backup in case my vent acts up ever again.
Have any of you experienced an incident like this or do you use a pulse ox as a backup precaution?
Thanks!
Mark
It’s the same Hotmail®. If by “same” you mean up to 70% faster. Get your account now.
I am so glad to see you blogging again. You have important things to say and I look forward to reading each entry. Don't put too much pressure on yourself to write a perfect entry everytime. Nothing wrong with short entries with whats on our mind:-)
Mark
blog: http://nodakwheeler.blogspot.com/
From: Chris <chriswebb2007@...> To: Duchenne_MD_Support_Group@yahoogroups.com Sent: Wednesday, December 17, 2008 8:05:09 PM Subject: [Duchenne_MD_Support_Group] Blog Update - 12/17/08
Ok, I was just wondering. We have a
pulse ox, but I only use is to measure Jason’s PSO2 levels. Good piece
of information to know
Adele
From:Duchenne_MD_Support_Group@yahoogroups.com [mailto:Duchenne_MD_Support_Group@yahoogroups.com] On Behalf Of Mark Boatman Sent: Friday, December 19, 2008
11:10 PM To:Duchenne_MD_Support_Group@yahoogroups.com Subject: Re:
[Duchenne_MD_Support_Group] Scary situation
Adele,
The pulse ox will alarm if my vent wouldn't alarm or stopped
working altogether. Great piece of mind...Mark
blog:
http://nodakwheeler.blogspot.com/
From: Adele
<jasona65@verizon.net> To:Duchenne_MD_Support_Group@yahoogroups.com Sent: Friday, December 19, 2008
7:34:31 AM Subject: RE: [Duchenne_MD_Support_Group]
Scary situation
Mark, I¢m so glad to hear that things turned out ok. I
have a question. You said that you now that you have a pulse oximeter,
you now have a back up. How is the pulse ox a backup? For what?
Adele
From: Duchenne_MD_ Support_Group@ yahoogroups. com
[mailto:Duchenne_ MD_Support_ Group@yahoogroup s.com] On Behalf Of Mark
Boatman Sent: Thursday, December 18, 2008
11:57 PM To: Duchenne MD Subject: [Duchenne_MD_
Support_Group] Scary situation
This morning I had something unexpected happen that scared the
hell out of me. I hate to even think what might of happened but I figured I
better warn other LTV users.
Before I begin, I want to give a bit of
background on my respiratory setup. I use a safety strap (made from another
trach tie) that velcroes to my trach tie and it keeps the ventilator circuit from
popping off. It has worked well for the nearly 6 years I've been trached.
This morning about 6:00 a.m. my vent circuit
popped off very slightly and it was still held on by the safety strap. I wasn't
getting any air and to my horror the vent (LTV 800) wasn't alarming. My
caregiver was fortunately awake enough to hear my distress call of clicking my
tongue against the roof of my mouth. She raced in and reconnected to my vent.
Needless to say I was really shaken up by the whole ordeal.
I contacted my DME and they had no idea why that
happened. I requested a pulse oximeter be ordered and they totally agreed with
me. My doc got the script to my DME and they brought it out tonight. I'm
relieved to have this backup in case my vent acts up ever again.
Have any of you experienced an incident like
this or do you use a pulse ox as a backup precaution?
I am so glad things turned out ok Mark! That is a horrible nightmare. Happy Holidays to you!
Bonnie
On Dec 18, 2008, at 9:56 PM, Mark Boatman wrote:
This morning I had something unexpected happen that scared the hell out of me. I hate to even think what might of happened but I figured I better warn other LTV users.
Before I begin, I want to give a bit of background on my respiratory setup. I use a safety strap (made from another trach tie) that velcroes to my trach tie and it keeps the ventilator circuit from popping off. It has worked well for the nearly 6 years I've been trached.
This morning about 6:00 a.m. my vent circuit popped off very slightly and it was still held on by the safety strap. I wasn't getting any air and to my horror the vent (LTV 800) wasn't alarming. My caregiver was fortunately awake enough to hear my distress call of clicking my tongue against the roof of my mouth. She raced in and reconnected to my vent. Needless to say I was really shaken up by the whole ordeal.
I contacted my DME and they had no idea why that happened. I requested a pulse oximeter be ordered and they totally agreed with me. My doc got the script to my DME and they brought it out tonight. I'm relieved to have this backup in case my vent acts up ever again.
Have any of you experienced an incident like this or do you use a pulse ox as a backup precaution?
The pulse ox will alarm if my vent wouldn't alarm or stopped working altogether. Great piece of mind...Mark
blog: http://nodakwheeler.blogspot.com/
From: Adele <jasona65@...> To: Duchenne_MD_Support_Group@yahoogroups.com Sent: Friday, December 19, 2008 7:34:31 AM Subject: RE: [Duchenne_MD_Support_Group] Scary situation
Mark, I¢m so glad to hear that
things turned out ok. I have a question. You said that you now that
you have a pulse oximeter, you now have a back up. How is the pulse ox a
backup? For what?
Adele
From:
Duchenne_MD_ Support_Group@ yahoogroups. com
[mailto:Duchenne_ MD_Support_ Group@yahoogroup s.com] On Behalf Of Mark Boatman Sent: Thursday, December 18, 2008
11:57 PM To: Duchenne MD Subject: [Duchenne_MD_ Support_Group]
Scary situation
This morning I had something unexpected
happen that scared the hell out of me. I hate to even think what might of
happened but I figured I better warn other LTV users.
Before I begin, I want to give a bit of
background on my respiratory setup. I use a safety strap (made from another
trach tie) that velcroes to my trach tie and it keeps the ventilator circuit
from popping off. It has worked well for the nearly 6 years I've been trached.
This morning about 6:00 a.m. my vent circuit
popped off very slightly and it was still held on by the safety strap. I wasn't
getting any air and to my horror the vent (LTV 800) wasn't alarming. My
caregiver was fortunately awake enough to hear my distress call of clicking my
tongue against the roof of my mouth. She raced in and reconnected to my vent.
Needless to say I was really shaken up by the whole ordeal.
I contacted my DME and they had no idea why that
happened. I requested a pulse oximeter be ordered and they totally agreed with
me. My doc got the script to my DME and they brought it out tonight. I'm
relieved to have this backup in case my vent acts up ever again.
Have any of you experienced an incident like
this or do you use a pulse ox as a backup precaution?
Mark, I’m so glad to hear that
things turned out ok. I have a question. You said that you now that
you have a pulse oximeter, you now have a back up. How is the pulse ox a
backup? For what?
Adele
From:
Duchenne_MD_Support_Group@yahoogroups.com
[mailto:Duchenne_MD_Support_Group@yahoogroups.com] On Behalf Of Mark Boatman Sent: Thursday, December 18, 2008
11:57 PM To: Duchenne MD Subject: [Duchenne_MD_Support_Group]
Scary situation
This morning I had something unexpected
happen that scared the hell out of me. I hate to even think what might of
happened but I figured I better warn other LTV users.
Before I begin, I want to give a bit of
background on my respiratory setup. I use a safety strap (made from another
trach tie) that velcroes to my trach tie and it keeps the ventilator circuit
from popping off. It has worked well for the nearly 6 years I've been trached.
This morning about 6:00 a.m. my vent circuit
popped off very slightly and it was still held on by the safety strap. I wasn't
getting any air and to my horror the vent (LTV 800) wasn't alarming. My
caregiver was fortunately awake enough to hear my distress call of clicking my
tongue against the roof of my mouth. She raced in and reconnected to my vent.
Needless to say I was really shaken up by the whole ordeal.
I contacted my DME and they had no idea why that
happened. I requested a pulse oximeter be ordered and they totally agreed with
me. My doc got the script to my DME and they brought it out tonight. I'm
relieved to have this backup in case my vent acts up ever again.
Have any of you experienced an incident like
this or do you use a pulse ox as a backup precaution?
This morning I had something unexpected happen that scared the hell out of me. I hate to even think what might of happened but I figured I better warn other LTV users.
Before I begin, I want to give a bit of background on my respiratory setup. I use a safety strap (made from another trach tie) that velcroes to my trach tie and it keeps the ventilator circuit from popping off. It has worked well for the nearly 6 years I've been trached.
This morning about 6:00 a.m. my vent circuit popped off very slightly and it was still held on by the safety strap. I wasn't getting any air and to my horror the vent (LTV 800) wasn't alarming. My caregiver was fortunately awake enough to hear my distress call of clicking my tongue against the roof of my mouth. She raced in and reconnected to my vent. Needless to say I was really shaken up by the whole ordeal.
I contacted my DME and they had no idea why that happened. I requested a pulse oximeter be ordered and they totally agreed with me. My doc got the script to my DME and they brought it out tonight. I'm relieved to have this backup in case my vent acts up ever again.
Have any of you experienced an incident like this or do you use a pulse ox as a backup precaution?
I was so expecting Charlie Brown piano music to go with the photo! Good on you for donating to Toys for Tots. I admire your positive attitude and appreciate you sharing your thoughts and activities with all of us here.
I hope you enjoy a heartwarming Christmas holiday with lots of family and friends.
No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.19/1855 - Release Date: 12/18/2008 10:16 AM
Thanks Johanna! I'm sure things will go well and my doc is pretty confident about everything...Mark
From: The Wrights <mjib@...> To:
Duchenne_MD_Support_Group@yahoogroups.com Sent: Wednesday, December 17, 2008 1:02:52 PM Subject: Re: [Duchenne_MD_Support_Group] 12/14 blog
I hope your "blasting" is successful the first time, Mark, and that your transfer into and out of the apparatus is safe and painless for you. The Photoshop course sounds intriguing. I spend a lot of time with one of their older programs working on our photos.
No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.176 / Virus Database: 270.9.18/1849 - Release Date: 12/15/2008 9:01 AM
Always love your insight on things. Glad to hear you donated to Toys for Tots. A wonderful program indeed! Happy holidays to you and your family...Mark
From: John Herrmann <johnrsf@...> To: DisabilityVoiceSpace@yahoogroups.com; dmdpioneers@yahoogroups.com; Duchenne_MD_Support_Group@yahoogroups.com; MCSiegel19@...; MD-List@yahoogroups.com; Independent Living <independentliving@yahoogroups.com>; Neckbreathers <NeckBreathers@yahoogroups.com>; NPVSN Ventilator Support Group <npventsupport@yahoogroups.com>; Ostomates_R_Us <Ostomates_R_Us@yahoogroups.com> Sent: Thursday, December 18, 2008 11:15:39 AM Subject: [Duchenne_MD_Support_Group] New Blog Post
Hi Chris , you never know what will be interesting to other folk. The
fact that you are from Mass. caught my eye. We used to live in Hingham
many years ago . Now we're in Canada , but have great memories of Mass.
( I can't spell it !!!!!! ). Anyway keep writing , it's folk like you
who give us hope when we are dealing with our little guys. And have a
great Christmas with your family , if you've been to Hingham let me
know . NanatoMikhal (12)
I tried to comment on your blog, but the visual verification picture isn't working. The text of my comment:
"Thanks, Chris, for the update. I am one of those who would like to read about the "uninteresting" things you would write about. Most of us, able-bodied or not, don't spend our days reshaping the planet and our evenings at fabulous parties; life just isn't that dramatic for most people. The "read-worthy" stuff is all right between your ears, if you have the time, inclination, and skill to share it."
Thanks for keeping in touch. I would be very interested in hearing about your life in the hospital. It is not something most of us really know about from the inside. Also, Happy Holidays to you and to everyone! I am glad that you will get to particiapte in your family celebration!
Sometimes what you think may not be interesting can interest others. You are 40 years old with DMD, you are an inspiration. I look forward to reading more of your posts. Hope you have a wonderful holiday.
Audrey
To: Duchenne_MD_Support_Group@yahoogroups.com From: chriswebb2007@... Date: Thu, 18 Dec 2008 03:05:09 +0000 Subject: [Duchenne_MD_Support_Group] Blog Update - 12/17/08
Good for you, Chris. I hope your weekend celebration with your family turns
out even better than you anticipate. I look forward to your weekly blogs.
~ Johanna, mom of Ian (17) with DMD
----- Original Message -----
From: "Chris" <chriswebb2007@...>
To: <Duchenne_MD_Support_Group@yahoogroups.com>
Sent: Wednesday, December 17, 2008 7:05 PM
Subject: [Duchenne_MD_Support_Group] Blog Update - 12/17/08
> http://bostongimp.blogspot.com
>
>
> ------------------------------------
>
> Questions, Comments, Concerns?
>
> Moderators:
>
> Mark: nodakwheeler@...
> Theresa: azurewolf@...! Groups Links
>
>
>
--------------------------------------------------------------------------------
No virus found in this incoming message.
Checked by AVG - http://www.avg.com
Version: 8.0.176 / Virus Database: 270.9.19/1853 - Release Date: 12/17/2008
8:31 AM
From: Bonnie Dombrowski <Dombrofam@...> To: Duchenne_MD_Support_Group@yahoogroups.com Sent: Monday, December 15, 2008 7:45:41 PM Subject: Re: [Duchenne_MD_Support_Group] 12/14 blog
Hi Mark,
I just wanted to wish you well in the procedure for the stones. I really hope it works for you the first time around. Glad the school was accommodating to you as well! Have a merry merry and a happy happy as my mother always said!
I hope your "blasting" is successful the first time, Mark, and that your transfer into and out of the apparatus is safe and painless for you. The Photoshop course sounds intriguing. I spend a lot of time with one of their older programs working on our photos.
No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.18/1849 - Release Date: 12/15/2008 9:01 AM
I just wanted to wish you well in the procedure for the stones. I really hope it works for you the first time around. Glad the school was accommodating to you as well! Have a merry merry and a happy happy as my mother always said!