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Hi ,

We do not have a pulse ox. for Abby nor have we ever had one at home. Abby's

pulmonary doctor felt as though we could tell more about how Abby was doing

by observing her, knowing her coloring and body language. Dr. Zeitlin was

concerned that so many times, the machines falsely alarm and people become so

preoccupied watching numbers rather than knowing and observing the child. At

first I was concerned for Abby was so young to be on this machine, but now

down the road I am glad that we didn't have one.

Abby has used bi-pap since 10months of age. We do have an alarm system

attached to her bi-pap so that if the electric goes off, tubing becomes

disconnected, or if her pressures drop it alarms. Bruce and I sleep with a

baby monitor next to our bed which echoes the alarms (feeding machine or

bi-pap). Some people sleep with a radio on, we sleep to the sound of Abby

breathing. It is funny, my body is so use to her breathing that it

automatically wakes up if something isn't just right. From what I understand

some of the newer machines come with a built in alarm system which is nice.

Less to transport. Did they provide you with a humidification system?

Abby thinks nothing is funnier than at 3:00 a.m. to set the Bi-Pap alarms off

and watch Daddy or Mommy come running. Party time in Abby's room for she is

well rested and awake and doesn't understand why we don't want to play.

Hope Kendra makes out well using the Bi-Pap. It has been a miracle for Abby.

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Hi ,

We do not have a pulse ox. for Abby nor have we ever had one at home. Abby's

pulmonary doctor felt as though we could tell more about how Abby was doing

by observing her, knowing her coloring and body language. Dr. Zeitlin was

concerned that so many times, the machines falsely alarm and people become so

preoccupied watching numbers rather than knowing and observing the child. At

first I was concerned for Abby was so young to be on this machine, but now

down the road I am glad that we didn't have one.

Abby has used bi-pap since 10months of age. We do have an alarm system

attached to her bi-pap so that if the electric goes off, tubing becomes

disconnected, or if her pressures drop it alarms. Bruce and I sleep with a

baby monitor next to our bed which echoes the alarms (feeding machine or

bi-pap). Some people sleep with a radio on, we sleep to the sound of Abby

breathing. It is funny, my body is so use to her breathing that it

automatically wakes up if something isn't just right. From what I understand

some of the newer machines come with a built in alarm system which is nice.

Less to transport. Did they provide you with a humidification system?

Abby thinks nothing is funnier than at 3:00 a.m. to set the Bi-Pap alarms off

and watch Daddy or Mommy come running. Party time in Abby's room for she is

well rested and awake and doesn't understand why we don't want to play.

Hope Kendra makes out well using the Bi-Pap. It has been a miracle for Abby.

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Hi ,

We do not have a pulse ox. for Abby nor have we ever had one at home. Abby's

pulmonary doctor felt as though we could tell more about how Abby was doing

by observing her, knowing her coloring and body language. Dr. Zeitlin was

concerned that so many times, the machines falsely alarm and people become so

preoccupied watching numbers rather than knowing and observing the child. At

first I was concerned for Abby was so young to be on this machine, but now

down the road I am glad that we didn't have one.

Abby has used bi-pap since 10months of age. We do have an alarm system

attached to her bi-pap so that if the electric goes off, tubing becomes

disconnected, or if her pressures drop it alarms. Bruce and I sleep with a

baby monitor next to our bed which echoes the alarms (feeding machine or

bi-pap). Some people sleep with a radio on, we sleep to the sound of Abby

breathing. It is funny, my body is so use to her breathing that it

automatically wakes up if something isn't just right. From what I understand

some of the newer machines come with a built in alarm system which is nice.

Less to transport. Did they provide you with a humidification system?

Abby thinks nothing is funnier than at 3:00 a.m. to set the Bi-Pap alarms off

and watch Daddy or Mommy come running. Party time in Abby's room for she is

well rested and awake and doesn't understand why we don't want to play.

Hope Kendra makes out well using the Bi-Pap. It has been a miracle for Abby.

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hi wendy, we ade it home, still organzing my mind and life! Trying to get

erika back on New York time!

anyway, erika used to be on Bi-pap and also has a pulse ox. now we only have

the pulse ox, about 2 yrs ago we switched to a new one called oxi-smart, it

does not pick and alarm for false movement. it is great, i have her on it

all night and when she moves around it wont alarm unless she has apena (not

very often) or the trach gets plugged, she will cough and usually clear it on

her own.

THey do make them much more sofisticted now ie; the false alarms.

I also still have night nursing, theya re in her room (they probaly sleep

alot!) but the alarm will wake them. When we dont have a nurse we sleep on

her floor in her room. while we were in California for the month i slept in

a bed next to her and it alarmed maybe 1x during the night 4x the whole

month! I know am used to it and would probably not sleep one wink with out

it. I would be afraid i would not hear erika if she had a problem. THat

tome is the only down side i am so used to it. But since my insurance still

pays for it i will still use it, at least while she is still trached.

If you do get one ask for the oxi-smart, b/c befor i had it it alarmed all

the time./

if oyu want more info on it let me know!

tlak to you soon, and also i am dissapointed we didnt get to meet, we will in

octboer when we go back!

CAthie, erikas mom

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hi wendy, we ade it home, still organzing my mind and life! Trying to get

erika back on New York time!

anyway, erika used to be on Bi-pap and also has a pulse ox. now we only have

the pulse ox, about 2 yrs ago we switched to a new one called oxi-smart, it

does not pick and alarm for false movement. it is great, i have her on it

all night and when she moves around it wont alarm unless she has apena (not

very often) or the trach gets plugged, she will cough and usually clear it on

her own.

THey do make them much more sofisticted now ie; the false alarms.

I also still have night nursing, theya re in her room (they probaly sleep

alot!) but the alarm will wake them. When we dont have a nurse we sleep on

her floor in her room. while we were in California for the month i slept in

a bed next to her and it alarmed maybe 1x during the night 4x the whole

month! I know am used to it and would probably not sleep one wink with out

it. I would be afraid i would not hear erika if she had a problem. THat

tome is the only down side i am so used to it. But since my insurance still

pays for it i will still use it, at least while she is still trached.

If you do get one ask for the oxi-smart, b/c befor i had it it alarmed all

the time./

if oyu want more info on it let me know!

tlak to you soon, and also i am dissapointed we didnt get to meet, we will in

octboer when we go back!

CAthie, erikas mom

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hi wendy, we ade it home, still organzing my mind and life! Trying to get

erika back on New York time!

anyway, erika used to be on Bi-pap and also has a pulse ox. now we only have

the pulse ox, about 2 yrs ago we switched to a new one called oxi-smart, it

does not pick and alarm for false movement. it is great, i have her on it

all night and when she moves around it wont alarm unless she has apena (not

very often) or the trach gets plugged, she will cough and usually clear it on

her own.

THey do make them much more sofisticted now ie; the false alarms.

I also still have night nursing, theya re in her room (they probaly sleep

alot!) but the alarm will wake them. When we dont have a nurse we sleep on

her floor in her room. while we were in California for the month i slept in

a bed next to her and it alarmed maybe 1x during the night 4x the whole

month! I know am used to it and would probably not sleep one wink with out

it. I would be afraid i would not hear erika if she had a problem. THat

tome is the only down side i am so used to it. But since my insurance still

pays for it i will still use it, at least while she is still trached.

If you do get one ask for the oxi-smart, b/c befor i had it it alarmed all

the time./

if oyu want more info on it let me know!

tlak to you soon, and also i am dissapointed we didnt get to meet, we will in

octboer when we go back!

CAthie, erikas mom

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. My experience as a nurse is that oximeters are a pain in the butt

when used continuously. They alarm at the slightest movement, so soon they

are ignored. At home, when used for spot checks or possibly through the

night if they are not too active of a sleeper, I feel they can be effective.

The trick about oximeters is verifying that you are getting an accurate

reading, easy on cooperative kids, not easy on wiggly ones. I think the

staff are concerned that families panic over the numerous false readings. I

would think you would certainly be able to learn how to judge the accuracy,

so you could know if there was valid concern.

Kim

Mother of Dylan 5, Kayla 11, Tyler 14, wife to Roy

----------

>

>To: CHARGE

>Subject: bi-pap help please

>Date: Tue, May 7, 2002, 12:14 PM

>

> Hello everyone,

>

> I need a little help with a question I have about Kendra's bi-pap. She has

> been on c-pap before but recently started bi-pap.

>

> For home use, I would feel more comfortable having a pulse oximeter.

> However, I was told by three different personnel at the hospital why pulse

> oximeters are not provided to patients at home on bi-pap. The first reason

> was: " They don't do that in California " . The second reason was: ' " It's

> expensive " and the third reason was: " California believes that parents are

> too clueless to use pulse oximeters " . (!????)

>

> I was wondering if I could get a sense of how many people using bi-pap at

> home also use a pulse oximeter to insure safety? If you use (or don't use)

> a pulse oximeter, could you let me know either on the list or my personal

> e-mail: wkeedy@...

>

> Thanks so much. I would really appreciate knowing your thoughts on this.

>

> Thanks again,

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

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. My experience as a nurse is that oximeters are a pain in the butt

when used continuously. They alarm at the slightest movement, so soon they

are ignored. At home, when used for spot checks or possibly through the

night if they are not too active of a sleeper, I feel they can be effective.

The trick about oximeters is verifying that you are getting an accurate

reading, easy on cooperative kids, not easy on wiggly ones. I think the

staff are concerned that families panic over the numerous false readings. I

would think you would certainly be able to learn how to judge the accuracy,

so you could know if there was valid concern.

Kim

Mother of Dylan 5, Kayla 11, Tyler 14, wife to Roy

----------

>

>To: CHARGE

>Subject: bi-pap help please

>Date: Tue, May 7, 2002, 12:14 PM

>

> Hello everyone,

>

> I need a little help with a question I have about Kendra's bi-pap. She has

> been on c-pap before but recently started bi-pap.

>

> For home use, I would feel more comfortable having a pulse oximeter.

> However, I was told by three different personnel at the hospital why pulse

> oximeters are not provided to patients at home on bi-pap. The first reason

> was: " They don't do that in California " . The second reason was: ' " It's

> expensive " and the third reason was: " California believes that parents are

> too clueless to use pulse oximeters " . (!????)

>

> I was wondering if I could get a sense of how many people using bi-pap at

> home also use a pulse oximeter to insure safety? If you use (or don't use)

> a pulse oximeter, could you let me know either on the list or my personal

> e-mail: wkeedy@...

>

> Thanks so much. I would really appreciate knowing your thoughts on this.

>

> Thanks again,

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

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Guest guest

. My experience as a nurse is that oximeters are a pain in the butt

when used continuously. They alarm at the slightest movement, so soon they

are ignored. At home, when used for spot checks or possibly through the

night if they are not too active of a sleeper, I feel they can be effective.

The trick about oximeters is verifying that you are getting an accurate

reading, easy on cooperative kids, not easy on wiggly ones. I think the

staff are concerned that families panic over the numerous false readings. I

would think you would certainly be able to learn how to judge the accuracy,

so you could know if there was valid concern.

Kim

Mother of Dylan 5, Kayla 11, Tyler 14, wife to Roy

----------

>

>To: CHARGE

>Subject: bi-pap help please

>Date: Tue, May 7, 2002, 12:14 PM

>

> Hello everyone,

>

> I need a little help with a question I have about Kendra's bi-pap. She has

> been on c-pap before but recently started bi-pap.

>

> For home use, I would feel more comfortable having a pulse oximeter.

> However, I was told by three different personnel at the hospital why pulse

> oximeters are not provided to patients at home on bi-pap. The first reason

> was: " They don't do that in California " . The second reason was: ' " It's

> expensive " and the third reason was: " California believes that parents are

> too clueless to use pulse oximeters " . (!????)

>

> I was wondering if I could get a sense of how many people using bi-pap at

> home also use a pulse oximeter to insure safety? If you use (or don't use)

> a pulse oximeter, could you let me know either on the list or my personal

> e-mail: wkeedy@...

>

> Thanks so much. I would really appreciate knowing your thoughts on this.

>

> Thanks again,

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

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Kim,

Thanks so much for your quick reply.

It seems to me that for use for the first few nights at home could give us

a good measure of safety that the machine is working correctly and Kendra

is oxigenating well.

One thing that concerns me is the issue of what happens if the mask is

somehow obstructed and doesn't alarm. Or if the power goes out with no

alarm and the mask is still in place obstructing breathing. It would feel

safer knowing that the oximeter would give us an additional alarm.

Thanks again! I really appreciate your input.

Mom to Kendra, and Camille

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Kim,

Thanks so much for your quick reply.

It seems to me that for use for the first few nights at home could give us

a good measure of safety that the machine is working correctly and Kendra

is oxigenating well.

One thing that concerns me is the issue of what happens if the mask is

somehow obstructed and doesn't alarm. Or if the power goes out with no

alarm and the mask is still in place obstructing breathing. It would feel

safer knowing that the oximeter would give us an additional alarm.

Thanks again! I really appreciate your input.

Mom to Kendra, and Camille

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Guest guest

what the heck is in the water out there that makes parents to clueless

to use a pulse ox on the west coast ?????(just kidding) isnt on bi

pap but he has a pulse ox. the cardiologist think an apnea moniter would

be pointless because by the time it sounded he would be in more trouble

then with the pulse ox. But then he has never had an apnea problem he

has very bad heart issues but he desats before his heart rate does

anything wierd I hope this helps some ( bye the way I am in New York)

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

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Guest guest

what the heck is in the water out there that makes parents to clueless

to use a pulse ox on the west coast ?????(just kidding) isnt on bi

pap but he has a pulse ox. the cardiologist think an apnea moniter would

be pointless because by the time it sounded he would be in more trouble

then with the pulse ox. But then he has never had an apnea problem he

has very bad heart issues but he desats before his heart rate does

anything wierd I hope this helps some ( bye the way I am in New York)

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

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Guest guest

what the heck is in the water out there that makes parents to clueless

to use a pulse ox on the west coast ?????(just kidding) isnt on bi

pap but he has a pulse ox. the cardiologist think an apnea moniter would

be pointless because by the time it sounded he would be in more trouble

then with the pulse ox. But then he has never had an apnea problem he

has very bad heart issues but he desats before his heart rate does

anything wierd I hope this helps some ( bye the way I am in New York)

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

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Dear :

I would appreciate knowing the difference between the c-pap and the bi-pap.

We know very little about either, but 's ENT has mentioned them. Perhaps

more so after the glossopexy is released.

Although is much younger...I'll add my 2 cents about pulse oximeters

(without bi-pap). They are a nuisance, but for us a necessary one (as we

haven't had any nursing or respite care). We have learned very quickly with

, when the alarms are false due to movement. We also have a baby monitor

by our bed. For us it's been an extra...sense of security. It will alarm us,

to check on her, not (just) the numbers!? -- Having the pulse oximeter has

worked quite well for us, however when is ill, it's 24/7-swing shifts.

The medical supplier for 's needs, had us try; I 'believe' it was called

a Radical oximeter, as this monitor didn't pick up movement (much less). But

for some 'busy' reason I can't remember why we only had it for a short time.

I 'think' it stored data, so the coordinator of 's 'team' could review

it.

Hope all goes well for Kendra. As you are the most precious gift to her!

Thanks,

Jan H. Mom to (shy 19 mo). CH(A?)RGE (We're off to see the geneticist

again, today!)

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Dear :

I would appreciate knowing the difference between the c-pap and the bi-pap.

We know very little about either, but 's ENT has mentioned them. Perhaps

more so after the glossopexy is released.

Although is much younger...I'll add my 2 cents about pulse oximeters

(without bi-pap). They are a nuisance, but for us a necessary one (as we

haven't had any nursing or respite care). We have learned very quickly with

, when the alarms are false due to movement. We also have a baby monitor

by our bed. For us it's been an extra...sense of security. It will alarm us,

to check on her, not (just) the numbers!? -- Having the pulse oximeter has

worked quite well for us, however when is ill, it's 24/7-swing shifts.

The medical supplier for 's needs, had us try; I 'believe' it was called

a Radical oximeter, as this monitor didn't pick up movement (much less). But

for some 'busy' reason I can't remember why we only had it for a short time.

I 'think' it stored data, so the coordinator of 's 'team' could review

it.

Hope all goes well for Kendra. As you are the most precious gift to her!

Thanks,

Jan H. Mom to (shy 19 mo). CH(A?)RGE (We're off to see the geneticist

again, today!)

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Dear :

I would appreciate knowing the difference between the c-pap and the bi-pap.

We know very little about either, but 's ENT has mentioned them. Perhaps

more so after the glossopexy is released.

Although is much younger...I'll add my 2 cents about pulse oximeters

(without bi-pap). They are a nuisance, but for us a necessary one (as we

haven't had any nursing or respite care). We have learned very quickly with

, when the alarms are false due to movement. We also have a baby monitor

by our bed. For us it's been an extra...sense of security. It will alarm us,

to check on her, not (just) the numbers!? -- Having the pulse oximeter has

worked quite well for us, however when is ill, it's 24/7-swing shifts.

The medical supplier for 's needs, had us try; I 'believe' it was called

a Radical oximeter, as this monitor didn't pick up movement (much less). But

for some 'busy' reason I can't remember why we only had it for a short time.

I 'think' it stored data, so the coordinator of 's 'team' could review

it.

Hope all goes well for Kendra. As you are the most precious gift to her!

Thanks,

Jan H. Mom to (shy 19 mo). CH(A?)RGE (We're off to see the geneticist

again, today!)

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Hi ,

This is Lori Brittell, you might not recognize my new ID, I'm now

dezert_penguin@..., no more hotmail for me. Anyway, do you at

least have an apnea monitor? If they won't give you a pulse-ox, they

should definitely give you an apnea monitor - demand one or the

other!!

Lori-Mom2CHaRgEr,Cheyenne

> Hello everyone,

>

> I need a little help with a question I have about Kendra's bi-pap.

She has

> been on c-pap before but recently started bi-pap.

>

> For home use, I would feel more comfortable having a pulse

oximeter.

> However, I was told by three different personnel at the hospital

why pulse

> oximeters are not provided to patients at home on bi-pap. The

first reason

> was: " They don't do that in California " . The second reason

was: ' " It's

> expensive " and the third reason was: " California believes that

parents are

> too clueless to use pulse oximeters " . (!????)

>

> I was wondering if I could get a sense of how many people using bi-

pap at

> home also use a pulse oximeter to insure safety? If you use (or

don't use)

> a pulse oximeter, could you let me know either on the list or my

personal

> e-mail: wkeedy@e...

>

> Thanks so much. I would really appreciate knowing your thoughts on

this.

>

> Thanks again,

>

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Hi ,

This is Lori Brittell, you might not recognize my new ID, I'm now

dezert_penguin@..., no more hotmail for me. Anyway, do you at

least have an apnea monitor? If they won't give you a pulse-ox, they

should definitely give you an apnea monitor - demand one or the

other!!

Lori-Mom2CHaRgEr,Cheyenne

> Hello everyone,

>

> I need a little help with a question I have about Kendra's bi-pap.

She has

> been on c-pap before but recently started bi-pap.

>

> For home use, I would feel more comfortable having a pulse

oximeter.

> However, I was told by three different personnel at the hospital

why pulse

> oximeters are not provided to patients at home on bi-pap. The

first reason

> was: " They don't do that in California " . The second reason

was: ' " It's

> expensive " and the third reason was: " California believes that

parents are

> too clueless to use pulse oximeters " . (!????)

>

> I was wondering if I could get a sense of how many people using bi-

pap at

> home also use a pulse oximeter to insure safety? If you use (or

don't use)

> a pulse oximeter, could you let me know either on the list or my

personal

> e-mail: wkeedy@e...

>

> Thanks so much. I would really appreciate knowing your thoughts on

this.

>

> Thanks again,

>

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Guest guest

Hi ,

This is Lori Brittell, you might not recognize my new ID, I'm now

dezert_penguin@..., no more hotmail for me. Anyway, do you at

least have an apnea monitor? If they won't give you a pulse-ox, they

should definitely give you an apnea monitor - demand one or the

other!!

Lori-Mom2CHaRgEr,Cheyenne

> Hello everyone,

>

> I need a little help with a question I have about Kendra's bi-pap.

She has

> been on c-pap before but recently started bi-pap.

>

> For home use, I would feel more comfortable having a pulse

oximeter.

> However, I was told by three different personnel at the hospital

why pulse

> oximeters are not provided to patients at home on bi-pap. The

first reason

> was: " They don't do that in California " . The second reason

was: ' " It's

> expensive " and the third reason was: " California believes that

parents are

> too clueless to use pulse oximeters " . (!????)

>

> I was wondering if I could get a sense of how many people using bi-

pap at

> home also use a pulse oximeter to insure safety? If you use (or

don't use)

> a pulse oximeter, could you let me know either on the list or my

personal

> e-mail: wkeedy@e...

>

> Thanks so much. I would really appreciate knowing your thoughts on

this.

>

> Thanks again,

>

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Dear Lori (I love your new ID), , , Jan and everyone who wrote

about bi-pap questions I had. I really appreciate the input. Wow.

One of the reasons I am concerned is this:

The first night Kendra used the machine in the hospital, the pressure was

not working due to a leak in the seal. The machine did not pick this up

and instead the respiratory therapists saw Kendra's O2 levels drop and

administered oxygen. They didn't know they needed to fix the seal. It took

4 litres of O2 to get Kendra back to a good O2 level. This is completely

unprecedented for Kendra to need oxygen at that level (or at any level now

for that matter). If we had been at home, and the machine did not pick up

that leak, I would not have been aware of the drop in O2.

We have never had a pulse ox during the years of trachs and of oxygen at

night and before when we had cpap. But I really feel it is

important. Lori, we do have a heart monitor that we bought after several

years of renting, but I think due to the fact Kendra breaks out so much

with the leads and due to the fact there are so many wires involved, the

pulse ox would be more easily used by Kendra at this point I think.

However, if we can not get the pulse ox, we will use the monitor.

Thanks again everyone for the perspectives. I do think we need something

for sure.

(beats me what's in the water, !) :-)

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Cathie,

Thanks for your information about the oxi-smart. That's really helpful

information and to A. thanks as well for the brand

recommendation. That makes it a lot easier to get a prescription.

Cathie, I REALLY hope we can meet next time you are here. I know Kendra

will love meeting as well. Maybe the weather will be better when you

come back. :-)

Thanks again,

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