Re: DW's sleep study results

August 28, 2004

Lynda,

Yes, it sounds just right. I am glad to hear the docs are stepping in

and taking care of some of the issues that more than likely should have

been addressed earlier, but we can't think for the docs, can we?

Hugs,

Lynda and Dewayne Rose wrote:

>Hi to all,

>First off, thanks to each and everyone of you for the kind uplifting

messages....also the ones to urge me to fight for DW. I have fought in the

past, guess I'm tiring out and not being aggressive enough.

>Well, the sleep study results were not good. DW's Oxygen levels are in the

80's

>60% of the time while sleeping and the low 90's the remainder of the time. The

good news is that explains his loss of memory, confusion, etc.... The dr. said

it was the strangest study he'd ever done.....kept apologizing for not knowing

about mito. On the first visit, he said in med school, they mentioned it with 3

sentences.... " very rare disease which you'll more than likely never see. Don't

be concerned with it. " It is central sleep apnea, not obstructive. He explained

there is a part of the brain that tells us to breath....DW's obviously isn't

working anymore. They did an arterial blood gas Thursday which showed 95. So

he is getting enough while awake. We should have the Cpap sometime Monday. The

plan is to try it for 2 weeks, have another sleep study with it.....if that

doesn't correct it then Oxygen will be used.....maybe a combo of the two....If

no fix there, then a tracheotomy and ventilator at night....(think Niki does

this, don't you) He also thought DW's lungs were very weak. We then visited

the neuro.....he immediately told us he could see a huge decline in DW's health

in the past 3 weeks. He promised as soon as the O is taken care of then DW will

be seen by a pain mgt clinic. Dr. said that he couldn't up the narcotics he

takes without danger of stopping his breathing altogether. He said " oh buddy, I

am going to take care of you. " Next I asked for a wheelchair script....he said

certainly. Big change from last time (He was having an awful day on the last

visit with patients dying, etc..) Anyway it is for a portable push

chair....that won't work. DW is 6'3 " and 210, I'm 5'1 " and well I won't reveal

my weight on grounds it might incriminate me:) Gonna email the doc and tell him

I need a power chair script....Hated to say things in front of DW, he was

already crushed about the brain and trach. So I'm going to let him know that I

just can't push DW, watch our child and do things we want to do.

>Know this is long, does it sound right? I mean everything made sense what they

said...just thought someone may have comments.

>Thanks again for everything....only hope I can be of help, cheer and hope to

some of you sometime. Love and prayers, Lynda R.

>

August 28, 2004

Hi Lynda,

You asked if this sounds right.. yes it does. I'm sorry that the results of

your appointments weren't more positive but you did get answers and now maybe

there will be some help to follow. FYI - I am on CPAP with supplemental oxygen

with the same readings that you indicated for Dwayne except my 80's are more

than 70% of the night. I think you will all notice a change with the CPAP and

if they add oxygen also. BTW - the sleep study doctor looks at my reports and

then at me with a question on his face when I see him. It actually makes me

laugh. I'm just one big puzzle to him.

Push for that power chair now because you certainly should meet the

qualifications for one. It's possible that the doctor doesn't know if Dwayne

can mentally handle a power chair but you are his wife so you should know. They

can be tricky though FYI.

Good Luck!

Alice

August 28, 2004

Lynda

It does sound correct. I am glad they are moving on the CPAP and glad they

will be testing it with another sleep study. I just repeated the study after

6 years.

Good luck with the wheelchair issue. Can you possibly borrow a power chair

to see if Dewayne can operate it. There are many organizations that have

loan closets. If you end up going with a standard chair, make sure it is as

light as possible and that the handles are in the correct place for you.

This can make a big difference in the effort it takes to push it.

Hugs,

laurie

>

> Reply-To:

> Date: Sat, 28 Aug 2004 18:24:36 -0400

> To: >

> Subject: DW's sleep study results

>

> Hi to all,

> First off, thanks to each and everyone of you for the kind uplifting

> messages....also the ones to urge me to fight for DW. I have fought in the

> past, guess I'm tiring out and not being aggressive enough.

> Well, the sleep study results were not good. DW's Oxygen levels are in the

> 80's

> 60% of the time while sleeping and the low 90's the remainder of the time.

> The good news is that explains his loss of memory, confusion, etc.... The dr.

> said it was the strangest study he'd ever done.....kept apologizing for not

> knowing about mito. On the first visit, he said in med school, they mentioned

> it with 3 sentences.... " very rare disease which you'll more than likely never

> see. Don't be concerned with it. " It is central sleep apnea, not obstructive.

> He explained there is a part of the brain that tells us to breath....DW's

> obviously isn't working anymore. They did an arterial blood gas Thursday

> which showed 95. So he is getting enough while awake. We should have the

> Cpap sometime Monday. The plan is to try it for 2 weeks, have another sleep

> study with it.....if that doesn't correct it then Oxygen will be

> used.....maybe a combo of the two....If no fix there, then a tracheotomy and

> ventilator at night....(think Niki does this, don't you) He also thought DW's

> lungs were very weak. We then visited the neuro.....he immediately told us he

> could see a huge decline in DW's health in the past 3 weeks. He promised as

> soon as the O is taken care of then DW will be seen by a pain mgt clinic. Dr.

> said that he couldn't up the narcotics he takes without danger of stopping his

> breathing altogether. He said " oh buddy, I am going to take care of you. "

> Next I asked for a wheelchair script....he said certainly. Big change from

> last time (He was having an awful day on the last visit with patients dying,

> etc..) Anyway it is for a portable push chair....that won't work. DW is 6'3 "

> and 210, I'm 5'1 " and well I won't reveal my weight on grounds it might

> incriminate me:) Gonna email the doc and tell him I need a power chair

> script....Hated to say things in front of DW, he was already crushed about the

> brain and trach. So I'm going to let him know that I just can't push DW,

> watch our child and do things we want to do.

> Know this is long, does it sound right? I mean everything made sense what

> they said...just thought someone may have comments.

> Thanks again for everything....only hope I can be of help, cheer and hope to

> some of you sometime. Love and prayers, Lynda R.

>

August 29, 2004

Yes it sounds right as far as I know, I understand about being tired to

fight some times we just were our selves out and need to be reminded.

I will pray that he does not need a trach and that you don't have to fight

so hard.

Love to you all

Hugs Jan

DW's sleep study results

> Hi to all,

> First off, thanks to each and everyone of you for the kind uplifting

messages....also the ones to urge me to fight for DW. I have fought in the

past, guess I'm tiring out and not being aggressive enough.

> Well, the sleep study results were not good. DW's Oxygen levels are in

the 80's

> 60% of the time while sleeping and the low 90's the remainder of the time.

The good news is that explains his loss of memory, confusion, etc.... The

dr. said it was the strangest study he'd ever done.....kept apologizing for

not knowing about mito. On the first visit, he said in med school, they

mentioned it with 3 sentences.... " very rare disease which you'll more than

likely never see. Don't be concerned with it. " It is central sleep apnea,

not obstructive. He explained there is a part of the brain that tells us to

breath....DW's obviously isn't working anymore. They did an arterial blood

gas Thursday which showed 95. So he is getting enough while awake. We

should have the Cpap sometime Monday. The plan is to try it for 2 weeks,

have another sleep study with it.....if that doesn't correct it then Oxygen

will be used.....maybe a combo of the two....If no fix there, then a

tracheotomy and ventilator at night....(think Niki does this, don't you) He

also thought DW's lungs were very weak. We then visited the neuro.....he

immediately told us he could see a huge decline in DW's health in the past 3

weeks. He promised as soon as the O is taken care of then DW will be seen

by a pain mgt clinic. Dr. said that he couldn't up the narcotics he takes

without danger of stopping his breathing altogether. He said " oh buddy, I

am going to take care of you. " Next I asked for a wheelchair script....he

said certainly. Big change from last time (He was having an awful day on

the last visit with patients dying, etc..) Anyway it is for a portable push

chair....that won't work. DW is 6'3 " and 210, I'm 5'1 " and well I won't

reveal my weight on grounds it might incriminate me:) Gonna email the doc

and tell him I need a power chair script....Hated to say things in front of

DW, he was already crushed about the brain and trach. So I'm going to let

him know that I just can't push DW, watch our child and do things we want to

do.

> Know this is long, does it sound right? I mean everything made sense what

they said...just thought someone may have comments.

> Thanks again for everything....only hope I can be of help, cheer and hope

to some of you sometime. Love and prayers, Lynda R.

>

August 29, 2004