Re: B Update

[Guest guest]

Hi ,

Have you been seeing or Bill since left? has seen

mostly. There was one time we went in and saw , had

a

couple of red spots and we had to go back a couple of days later for

another adjustment, and we saw Bill and he fixed her band. I did

notice a difference when scanned this week, he didn't put

the stickers on 's ears like did, And after the scan they

used the computer to line it up, to the previous scan. She has been

doing well so far. Her asymmetry has gone from 11.6mm to 6.8mm.

>

> has been wearing her newest Starband since january and has

> been slowly improving. However, her ortho has left the office and

his

> replacement cant seem to get it adjusted right. It keeps causing

red

> sores and now looks crooked. I am unsure whether I should continue

to

> keep trying to get the fit right at her age, or if she really won't

> improve more anyway? She is already 13 months old. Has anyone seen

> good progress at thsi point in a Starband? She is currently 13.3

mm.

I

> added a new top picture to her folder ( B.)

> Thanks,

> -mom to

> Starband #3

[Guest guest]

Hi ,

Have you been seeing or Bill since left? has seen

mostly. There was one time we went in and saw , had

a

couple of red spots and we had to go back a couple of days later for

another adjustment, and we saw Bill and he fixed her band. I did

notice a difference when scanned this week, he didn't put

the stickers on 's ears like did, And after the scan they

used the computer to line it up, to the previous scan. She has been

doing well so far. Her asymmetry has gone from 11.6mm to 6.8mm.

>

> has been wearing her newest Starband since january and has

> been slowly improving. However, her ortho has left the office and

his

> replacement cant seem to get it adjusted right. It keeps causing

red

> sores and now looks crooked. I am unsure whether I should continue

to

> keep trying to get the fit right at her age, or if she really won't

> improve more anyway? She is already 13 months old. Has anyone seen

> good progress at thsi point in a Starband? She is currently 13.3

mm.

I

> added a new top picture to her folder ( B.)

> Thanks,

> -mom to

> Starband #3

[Guest guest]

Hi,

We have been seeing . He is friendly, but nervous around

when she cries and hurried. He was very quick about her

adjustments and didnt check the fit after. Should i ask to see Bill

then? I hate to keep driving out of state for it to just keep

irritating her head. It would be worth it if she will improve more.

>

> Hi ,

> Have you been seeing or Bill since left? has

seen

> mostly. There was one time we went in and saw ,

had

> a

> couple of red spots and we had to go back a couple of days later

for

> another adjustment, and we saw Bill and he fixed her band. I did

> notice a difference when scanned this week, he didn't

put

> the stickers on 's ears like did, And after the scan

they

> used the computer to line it up, to the previous scan. She has

been

> doing well so far. Her asymmetry has gone from 11.6mm to 6.8mm.

>

> --- In Plagiocephaly , " " <angembal@y...>

wrote:

> >

> > has been wearing her newest Starband since january and

has

> > been slowly improving. However, her ortho has left the office and

> his

> > replacement cant seem to get it adjusted right. It keeps causing

> red

> > sores and now looks crooked. I am unsure whether I should

continue

> to

> > keep trying to get the fit right at her age, or if she really

won't

> > improve more anyway? She is already 13 months old. Has anyone

seen

> > good progress at thsi point in a Starband? She is currently 13.3

> mm.

> I

> > added a new top picture to her folder ( B.)

> > Thanks,

> > -mom to

> > Starband #3

[Guest guest]

Hi,

We have been seeing . He is friendly, but nervous around

when she cries and hurried. He was very quick about her

adjustments and didnt check the fit after. Should i ask to see Bill

then? I hate to keep driving out of state for it to just keep

irritating her head. It would be worth it if she will improve more.

>

> Hi ,

> Have you been seeing or Bill since left? has

seen

> mostly. There was one time we went in and saw ,

had

> a

> couple of red spots and we had to go back a couple of days later

for

> another adjustment, and we saw Bill and he fixed her band. I did

> notice a difference when scanned this week, he didn't

put

> the stickers on 's ears like did, And after the scan

they

> used the computer to line it up, to the previous scan. She has

been

> doing well so far. Her asymmetry has gone from 11.6mm to 6.8mm.

>

> --- In Plagiocephaly , " " <angembal@y...>

wrote:

> >

> > has been wearing her newest Starband since january and

has

> > been slowly improving. However, her ortho has left the office and

> his

> > replacement cant seem to get it adjusted right. It keeps causing

> red

> > sores and now looks crooked. I am unsure whether I should

continue

> to

> > keep trying to get the fit right at her age, or if she really

won't

> > improve more anyway? She is already 13 months old. Has anyone

seen

> > good progress at thsi point in a Starband? She is currently 13.3

> mm.

> I

> > added a new top picture to her folder ( B.)

> > Thanks,

> > -mom to

> > Starband #3

[Guest guest]

Hi ,

I would agree that is very friendly. I have not noticed

being hurried and he always has checked the fit of 's band. I

would see if you could make you next appt will Bill maybe he can help

with the fit if 's band. I know if I were you I would want to

get more correction if I could. Let me know how you make out. When

is you next trip in?

Emilie

Mommy to 2.5 yrs and almost 7 months, tort and plagio

STARbanded on 1/27/05

> > >

> > > has been wearing her newest Starband since january and

> has

> > > been slowly improving. However, her ortho has left the office

and

> > his

> > > replacement cant seem to get it adjusted right. It keeps causing

> > red

> > > sores and now looks crooked. I am unsure whether I should

> continue

> > to

> > > keep trying to get the fit right at her age, or if she really

> won't

> > > improve more anyway? She is already 13 months old. Has anyone

> seen

> > > good progress at thsi point in a Starband? She is currently 13.3

> > mm.

> > I

> > > added a new top picture to her folder ( B.)

> > > Thanks,

> > > -mom to

> > > Starband #3

[Guest guest]

Hi ,

I would agree that is very friendly. I have not noticed

being hurried and he always has checked the fit of 's band. I

would see if you could make you next appt will Bill maybe he can help

with the fit if 's band. I know if I were you I would want to

get more correction if I could. Let me know how you make out. When

is you next trip in?

Emilie

Mommy to 2.5 yrs and almost 7 months, tort and plagio

STARbanded on 1/27/05

> > >

> > > has been wearing her newest Starband since january and

> has

> > > been slowly improving. However, her ortho has left the office

and

> > his

> > > replacement cant seem to get it adjusted right. It keeps causing

> > red

> > > sores and now looks crooked. I am unsure whether I should

> continue

> > to

> > > keep trying to get the fit right at her age, or if she really

> won't

> > > improve more anyway? She is already 13 months old. Has anyone

> seen

> > > good progress at thsi point in a Starband? She is currently 13.3

> > mm.

> > I

> > > added a new top picture to her folder ( B.)

> > > Thanks,

> > > -mom to

> > > Starband #3

[Guest guest]

Oh ! I can't even believe you are having trouble again! If I

were you, I would seriously tell Orthomerica that you have had it with

the STARband, demand your money back, threaten to sue if you have to,

and run screaming to the nearest DOCband provider. I am a repo mom,

so I don't have any direct experience but please please please don't

let them make you continue with treatment that is substandard. Let us

know how things go. Becky, mom to , repo grad in pgh, PA

>

> has been wearing her newest Starband since january and has

> been slowly improving. However, her ortho has left the office and

his

> replacement cant seem to get it adjusted right. It keeps causing red

> sores and now looks crooked. I am unsure whether I should continue

to

> keep trying to get the fit right at her age, or if she really won't

> improve more anyway? She is already 13 months old. Has anyone seen

> good progress at thsi point in a Starband? She is currently 13.3 mm.

I

> added a new top picture to her folder ( B.)

> Thanks,

> -mom to

> Starband #3

[Guest guest]

Oh ! I can't even believe you are having trouble again! If I

were you, I would seriously tell Orthomerica that you have had it with

the STARband, demand your money back, threaten to sue if you have to,

and run screaming to the nearest DOCband provider. I am a repo mom,

so I don't have any direct experience but please please please don't

let them make you continue with treatment that is substandard. Let us

know how things go. Becky, mom to , repo grad in pgh, PA

>

> has been wearing her newest Starband since january and has

> been slowly improving. However, her ortho has left the office and

his

> replacement cant seem to get it adjusted right. It keeps causing red

> sores and now looks crooked. I am unsure whether I should continue

to

> keep trying to get the fit right at her age, or if she really won't

> improve more anyway? She is already 13 months old. Has anyone seen

> good progress at thsi point in a Starband? She is currently 13.3 mm.

I

> added a new top picture to her folder ( B.)

> Thanks,

> -mom to

> Starband #3

[Guest guest]

thanks for that kendra. how totally frustrating and scary for lauren to feel

dismissed!

linda

2009/4/27 Kendra <kendranicole@...>

>

>

> Joe and I went to see today. She is down to one antibiotic and they

> changed her pain meds so she is awake here and there regularly. She is still

> intubated and vent provided O2 is down to 50, getting bumped up slightly in

> the evenings to make it more comfortable for her to sleep. One of her lungs

> still has some fluid in it. They expect it'll be another week in ICU before

> moving to a private room.

>

> is communicating and moving her hands around. She is sometimes able

> to write a little and point to objects. She attempts to speak, even with the

> tubes, but no voice yet. Communication at this point is a lengthy and

> tiresome process for her. She is feeling frustrated and believes that her

> opinion does not count in the hospital. She wants to move to Stanford and

> extubate immediately, but has been having a difficult time communicating

> with those in charge of her care.

>

> Her mother has given me access to speak directly with her doctors and

> nurses via telephone to receive updates. I will post as her status changes.

>

> <3Kendra

>

>

>

[Guest guest]

Thanks for the update, I keep checking my email to hear how she is doing. When I

was intubated and couldn't talk I found a picture/letter board I could spell out

what I needed. ~a

From: Kendra <kendranicole@...>

Subject: B Update

Date: Sunday, April 26, 2009, 9:08 PM

Joe and I went to see today. She is down to one antibiotic and they

changed her pain meds so she is awake here and there regularly. She is still

intubated and vent provided O2 is down to 50, getting bumped up slightly in the

evenings to make it more comfortable for her to sleep. One of her lungs still

has some fluid in it. They expect it'll be another week in ICU before moving to

a private room.

is communicating and moving her hands around. She is sometimes able to

write a little and point to objects. She attempts to speak, even with the tubes,

but no voice yet. Communication at this point is a lengthy and tiresome process

for her. She is feeling frustrated and believes that her opinion does not count

in the hospital. She wants to move to Stanford and extubate immediately, but has

been having a difficult time communicating with those in charge of her care.

Her mother has given me access to speak directly with her doctors and nurses via

telephone to receive updates. I will post as her status changes.

<3Kendra

[Guest guest]

There is an alphabet board and a picture card. did not appear interested

in using either of these as a means of communication today and rolled her eyes

when they were in front of her. Gotta love the attitude!

<3Kendra

> From: Kendra <kendranicole@...>

> Subject: B Update

>

> Date: Sunday, April 26, 2009, 9:08 PM

>

>

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> Joe and I went to see today. She is down to one antibiotic and

they changed her pain meds so she is awake here and there regularly. She is

still intubated and vent provided O2 is down to 50, getting bumped up slightly

in the evenings to make it more comfortable for her to sleep. One of her lungs

still has some fluid in it. They expect it'll be another week in ICU before

moving to a private room.

>

>

>

> is communicating and moving her hands around. She is sometimes able to

write a little and point to objects. She attempts to speak, even with the tubes,

but no voice yet. Communication at this point is a lengthy and tiresome process

for her. She is feeling frustrated and believes that her opinion does not count

in the hospital. She wants to move to Stanford and extubate immediately, but has

been having a difficult time communicating with those in charge of her care.

>

>

>

> Her mother has given me access to speak directly with her doctors and nurses

via telephone to receive updates. I will post as her status changes.

>

>

>

> <3Kendra

>

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[Guest guest]

Thank you for the update Kendra. Is it legal to keep someone intubated

against their will???

On 4/27/09 1:00 AM, " Kendra " <kendranicole@...> wrote:

>

>

>

>

>

> There is an alphabet board and a picture card. did not appear

> interested in using either of these as a means of communication today and

> rolled her eyes when they were in front of her. Gotta love the attitude!

>

> <3Kendra

>

>

>> > From: Kendra <kendranicole@...>

>> > Subject: B Update

>> > <mailto:%40>

>> > Date: Sunday, April 26, 2009, 9:08 PM

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> > Joe and I went to see today. She is down to one antibiotic and

>> they changed her pain meds so she is awake here and there regularly. She is

>> still intubated and vent provided O2 is down to 50, getting bumped up

>> slightly in the evenings to make it more comfortable for her to sleep. One of

>> her lungs still has some fluid in it. They expect it'll be another week in

>> ICU before moving to a private room.

>> >

>> >

>> >

>> > is communicating and moving her hands around. She is sometimes able

>> to write a little and point to objects. She attempts to speak, even with the

>> tubes, but no voice yet. Communication at this point is a lengthy and

>> tiresome process for her. She is feeling frustrated and believes that her

>> opinion does not count in the hospital. She wants to move to Stanford and

>> extubate immediately, but has been having a difficult time communicating with

>> those in charge of her care.

>> >

>> >

>> >

>> > Her mother has given me access to speak directly with her doctors and

>> nurses via telephone to receive updates. I will post as her status changes.

>> >

>> >

>> >

>> > <3Kendra

>> >

>> >

>> >

>> >

>> >

>> >

>> >

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>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

Thank you for keeping us in the loop. I hope you're giving her all our love

when you have the chance.

that's a good question. I would hope not and hope that someone else

here has a more definite answer.

On Mon, Apr 27, 2009 at 12:04 AM, <nicoleroberts@...

> wrote:

>

>

> Thank you for the update Kendra. Is it legal to keep someone intubated

> against their will???

>

> On 4/27/09 1:00 AM, " Kendra "

<kendranicole@...<kendranicole%40kendranicole.com>>

> wrote:

>

> >

> >

> >

> >

> >

> > There is an alphabet board and a picture card. did not appear

> > interested in using either of these as a means of communication today and

> > rolled her eyes when they were in front of her. Gotta love the attitude!

>

> >

> > <3Kendra

> >

> >

> >> > From: Kendra <kendranicole@...>

> >> > Subject: B Update

> >> > <%40><mailto:

> %40 <%2540>>

> >> > Date: Sunday, April 26, 2009, 9:08 PM

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> > Joe and I went to see today. She is down to one antibiotic and

> >> they changed her pain meds so she is awake here and there regularly. She

> is

> >> still intubated and vent provided O2 is down to 50, getting bumped up

> >> slightly in the evenings to make it more comfortable for her to sleep.

> One of

> >> her lungs still has some fluid in it. They expect it'll be another week

> in

> >> ICU before moving to a private room.

> >> >

> >> >

> >> >

> >> > is communicating and moving her hands around. She is sometimes

> able

> >> to write a little and point to objects. She attempts to speak, even with

> the

> >> tubes, but no voice yet. Communication at this point is a lengthy and

> >> tiresome process for her. She is feeling frustrated and believes that

> her

> >> opinion does not count in the hospital. She wants to move to Stanford

> and

> >> extubate immediately, but has been having a difficult time communicating

> with

> >> those in charge of her care.

> >> >

> >> >

> >> >

> >> > Her mother has given me access to speak directly with her doctors and

> >> nurses via telephone to receive updates. I will post as her status

> changes.

> >> >

> >> >

> >> >

> >> > <3Kendra

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

[Guest guest]

LOL!! :-)

From: Kendra <kendranicole@...>

Subject: Re: B Update

Date: Monday, April 27, 2009, 1:59 AM

There is an alphabet board and a picture card. did not appear

interested in using either of these as a means of communication today and rolled

her eyes when they were in front of her. Gotta love the attitude!

<3Kendra

> From: Kendra <kendranicole@ ...>

> Subject: B Update

> @gro ups.com

> Date: Sunday, April 26, 2009, 9:08 PM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Joe and I went to see today. She is down to one antibiotic and

they changed her pain meds so she is awake here and there regularly. She is

still intubated and vent provided O2 is down to 50, getting bumped up slightly

in the evenings to make it more comfortable for her to sleep. One of her lungs

still has some fluid in it. They expect it'll be another week in ICU before

moving to a private room.

>

>

>

> is communicating and moving her hands around. She is sometimes able to

write a little and point to objects. She attempts to speak, even with the tubes,

but no voice yet. Communication at this point is a lengthy and tiresome process

for her. She is feeling frustrated and believes that her opinion does not count

in the hospital. She wants to move to Stanford and extubate immediately, but has

been having a difficult time communicating with those in charge of her care.

>

>

>

> Her mother has given me access to speak directly with her doctors and nurses

via telephone to receive updates. I will post as her status changes.

>

>

>

> <3Kendra

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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>

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>

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>

[Guest guest]

My latest post on 's Facebook page:

I visited with today. She was sleepy on and off but definitely alert. It

was great to see her propped up a bit, and able to flash her eyes at us. I met

's longtime friend Lori who had driven up from Orange County. Lori saw her

both yesterday and today, and said was more alert today. Holly and the

nurse confirmed that today 's vital signs were more consistently better;

her blood pressure has been dropping too low, sometimes frighteningly low.

Communication seems to be the biggest problem, because is still intubated

and she has a fair amount of congestion in her lungs, though, much less. She's

VERY frustrated and obviously has a lot to say. She is not that definite about

saying " yes " or " no " ; she nods yes pretty readily, but for " no " she instead

waves her fingers and hands while mouthing the words trying to tell us more than

just " no " .

She seems mostly pretty oriented except for the difficulty with yes/no

conversations, and this difficulty is probably caused by a combination of the

meds she's on, fatigue, and frustration.

I loaned her my laptop and my attendant taught her how to use the

on-screen keyboard and spent a lot of time experimenting with mouse vs.

trackball vs. touch pad. She can use the trackball to click keys on the

on-screen keyboard to type out comments, questions, and maybe even log-on to the

internet. It'll take time for her to figure it out, but hopefully it will help

with her frustration and she can ask questions and let people know what she

wants.

I'll be going back on Friday.

I gave Holly Dr. Bach's e-mail address and phone number and explained that

Dr. Bach specializes in weaning people with neuromuscular diseases off of

invasive ventilators. I explained that 's doctor will need to be the one

who contacts him for a consultation. Hopefully this will be done asap.

[Guest guest]

I don't think it's very clear about whether or not is conscious enough or

fully informed enough about what's going on with her care to decide to be

extubated. That's why I'm really pushing for them to contact Dr. Bach.

>

> Thank you for the update Kendra. Is it legal to keep someone intubated

> against their will???

>

>

[Guest guest]

That is what I was thinking.

Sent from my Verizon Wireless BlackBerry

Re: B Update

I don't think it's very clear about whether or not is conscious enough or

fully informed enough about what's going on with her care to decide to be

extubated. That's why I'm really pushing for them to contact Dr. Bach.

>

> Thank you for the update Kendra. Is it legal to keep someone intubated

> against their will???

>

>

[Guest guest]

The laptop sounds like a potential lifesaver. Good idea!! When I was on a

vent waaayyyyyy back in the olden days I had nothing but pen & paper to work

with! ;-)

On 4/27/09 8:59 PM, " Alana " <alrt@...> wrote:

>

>

>

>

>

> My latest post on 's Facebook page:

>

> I visited with today. She was sleepy on and off but definitely alert.

> It was great to see her propped up a bit, and able to flash her eyes at us. I

> met 's longtime friend Lori who had driven up from Orange County. Lori

> saw her both yesterday and today, and said was more alert today. Holly

> and the nurse confirmed that today 's vital signs were more consistently

> better; her blood pressure has been dropping too low, sometimes frighteningly

> low.

>

> Communication seems to be the biggest problem, because is still

> intubated and she has a fair amount of congestion in her lungs, though, much

> less. She's VERY frustrated and obviously has a lot to say. She is not that

> definite about saying " yes " or " no " ; she nods yes pretty readily, but for " no "

> she instead waves her fingers and hands while mouthing the words trying to

> tell us more than just " no " .

>

> She seems mostly pretty oriented except for the difficulty with yes/no

> conversations, and this difficulty is probably caused by a combination of the

> meds she's on, fatigue, and frustration.

>

> I loaned her my laptop and my attendant taught her how to use the

> on-screen keyboard and spent a lot of time experimenting with mouse vs.

> trackball vs. touch pad. She can use the trackball to click keys on the

> on-screen keyboard to type out comments, questions, and maybe even log-on to

> the internet. It'll take time for her to figure it out, but hopefully it will

> help with her frustration and she can ask questions and let people know what

> she wants.

>

> I'll be going back on Friday.

>

> I gave Holly Dr. Bach's e-mail address and phone number and explained

> that Dr. Bach specializes in weaning people with neuromuscular diseases off of

> invasive ventilators. I explained that 's doctor will need to be the one

> who contacts him for a consultation. Hopefully this will be done asap.

>

>

>

>

>>>

[Guest guest]

A BlackBerry might be a good idea as well.  I use mine in bed a lot.

 

Lori

I am Bippy on Twitter.

________________________________

From: <nicoleroberts@...>

" " < >

Sent: Tuesday, April 28, 2009 1:27:59 AM

Subject: Re: Re: B Update

The laptop sounds like a potential lifesaver. Good idea!! When I was on a

vent waaayyyyyy back in the olden days I had nothing but pen & paper to work

with! ;-)

On 4/27/09 8:59 PM, " Alana " <alrtcomcast (DOT) net> wrote:

>

>

>

>

>

> My latest post on 's Facebook page:

>

> I visited with today. She was sleepy on and off but definitely alert.

> It was great to see her propped up a bit, and able to flash her eyes at us. I

> met 's longtime friend Lori who had driven up from Orange County. Lori

> saw her both yesterday and today, and said was more alert today. Holly

> and the nurse confirmed that today 's vital signs were more consistently

> better; her blood pressure has been dropping too low, sometimes frighteningly

> low.

>

> Communication seems to be the biggest problem, because is still

> intubated and she has a fair amount of congestion in her lungs, though, much

> less. She's VERY frustrated and obviously has a lot to say. She is not that

> definite about saying " yes " or " no " ; she nods yes pretty readily, but for " no "

> she instead waves her fingers and hands while mouthing the words trying to

> tell us more than just " no " .

>

> She seems mostly pretty oriented except for the difficulty with yes/no

> conversations, and this difficulty is probably caused by a combination of the

> meds she's on, fatigue, and frustration.

>

> I loaned her my laptop and my attendant taught her how to use the

> on-screen keyboard and spent a lot of time experimenting with mouse vs.

> trackball vs. touch pad. She can use the trackball to click keys on the

> on-screen keyboard to type out comments, questions, and maybe even log-on to

> the internet. It'll take time for her to figure it out, but hopefully it will

> help with her frustration and she can ask questions and let people know what

> she wants.

>

> I'll be going back on Friday.

>

> I gave Holly Dr. Bach's e-mail address and phone number and explained

> that Dr. Bach specializes in weaning people with neuromuscular diseases off of

> invasive ventilators. I explained that 's doctor will need to be the one

> who contacts him for a consultation. Hopefully this will be done asap.

>

>

>

>

>>>

[Guest guest]

Hopefully when she's extubated she'll be able to use her iPhone again.

>

> A BlackBerry might be a good idea as well.  I use mine in bed a lot.

>  

> Lori

>

>

[Guest guest]

I spoke with the nurse at Dominican this afternoon. They do not provide very

specific information (she " wanted to spare the details " ) and brushed off my

expression of 's wishes. I asked if was able to use the laptop that

was provided to her and the nurse replied " we are able to understand her needs, "

leaving me to believe that they are still not communicating with beyond

her requests to reposition.

The nurse did report that 's vent O2 level is down to 40%. They attempted

to extubate her today but " she didn't do well on the wean test. " She would not

describe what this wean test involved and became very defensive when I asked if

they were familiar with Dr. Bach's protocol or had communications with him

specific to - stating that medical care decisions are left up to her

parents and I can discuss those specifics with them. She abruptly ended the call

telling me that she cannot discuss any other questions I had.

<3Kendra

> >

> > A BlackBerry might be a good idea as well.  I use mine in bed a lot.

> >  

> > Lori

> >

> >

>

[Guest guest]

Kendra and I are tag-teaming 's mom about making sure she's being allowed

to use the laptop and to encourage her to have the doctor contact Dr. Bach.

I've also recruited Lori to try and help us. Hopefully she feels comfortable.

If nothing is happening by the time I visit on Friday, I will explain to Holly

that I am calling in an ombudsperson.

Wish us luch everyone!

[Guest guest]

You two are EXACTLY the type of friends a person hopes to have when they're

in a pinch. Thank you for keeping us in the loop and thank you for standing

up for and her wishes.

On Wed, Apr 29, 2009 at 8:03 PM, Alana <alrt@...> wrote:

>

>

> Kendra and I are tag-teaming 's mom about making sure she's being

> allowed to use the laptop and to encourage her to have the doctor contact

> Dr. Bach. I've also recruited Lori to try and help us. Hopefully she feels

> comfortable. If nothing is happening by the time I visit on Friday, I will

> explain to Holly that I am calling in an ombudsperson.

>

> Wish us luch everyone!

>

>

>

[Guest guest]

I¹m so glad you guys are doing this. It worries me that has been

intubated for so long. Does have a living will with any proxies

named? If not, after this we should encourage it... :-( I know I am

really far removed here in MN but if there is anything I can do to help

please let me know. Is ¹s mom receptive to your tag teaming

requests?

On 4/29/09 9:04 PM, " Alana " <alrt@...> wrote:

>

>

>

>

>

> Kendra and I are tag-teaming 's mom about making sure she's being

> allowed to use the laptop and to encourage her to have the doctor contact Dr.

> Bach. I've also recruited Lori to try and help us. Hopefully she feels

> comfortable. If nothing is happening by the time I visit on Friday, I will

> explain to Holly that I am calling in an ombudsperson.

>

> Wish us luch everyone!

>

>

>

>

>>>

[Guest guest]

I encourage all of you to have health care proxy advocates/a living will/an

advance directive -- anything -- written down appointing individuals (and

alternatives) that know your wishes to be the ones making decisions about your

health and life issues in the event you are unable to communicate them on your

own. It's important for everyone - with and without a disability - to think

about this now and have it completed.

I have one written out with a primary and alternative advocate. I have copies of

this document on file with local hospitals, my doctors, the MDA clinic, and

various friends so that it is clear who to contact.

will have one when this is done or she'll hear me ask about it for the

rest of her life!

<3Kendra

>

> I¹m so glad you guys are doing this. It worries me that has been

> intubated for so long. Does have a living will with any proxies

> named? If not, after this we should encourage it... :-( I know I am

> really far removed here in MN but if there is anything I can do to help

> please let me know. Is ¹s mom receptive to your tag teaming

> requests?

>

>

>