DW's sleep study results

[Guest guest]

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.