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RE: Oxygen

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Hi Deb,

I am just wondering if you could just get a pulse ox at home in the meanwhile to keep an eye on his sats? We have one and they are very easy to use. This way if he drops you will know and then let the dr's know.

I think they are hard to get unless you know for sur ethere is a problem. Actually (hope I didn't post this already) today the girl from the sleep clinic thinks that doing a Video EEG and an overnight pulse oxemetry will do the trick...so I guess if he drops then we can get one. Interestingly enough, I ran into my old boyfriends wife at Target a couple months ago (we are cool with each other and all) and found out they have an 18 month old with a rare pulmonology disease...so she has a pulse ox and I am going to run andrew over next time he is really winded and see waht it says...if it is otu of whack then I will take him on to the ER and let them document it. Of course I have no idea at what reading to take action, but I am assuming she will.

deb

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Hi Deb, I am sorry to hear the hospital is not accomadating you. We had a

sleep study/ video EEG ran together. Chelsea's neuro (at my request) called

and ordered more EEG leads to be put on so more brain activity could be

monitored, this was for an already sceduled sleep study. Ironically I have

never heard the results from her neuro about the seizure episodes that

happened during the nite.

As for the needing oxygen issue, if it was life threatening, you would be

seeing cyanosis (bluing of extremities, nose, lips), and probably gasping for

breath and/or hyperventilating. Chelsea started using O2 with her pneumonias.

Eventually she was dx's with sleep apnea. She has periodic dips of her O2,

due to apnea and decreased lung function. If 's problem is more like

Chelsea, you would probably see excessive daytime sleepiness because he is

not getting good sleep at nite.

Hope you are doing well,

e, Chelsea's mom(non-specific mito)

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As for the needing oxygen issue, if it was life threatening, you would be

seeing cyanosis (bluing of extremities, nose, lips), and probably gasping for

breath and/or hyperventilating.

well I have two things on this...one, since is back, I probably do'nt notice as easily but am going to try to remember next timehe is laboring...he does have cold extremeties sometimes (and the dysautonomia with temp issues so not sure about that). The other thing is Fred and i were watching Mattie on the telethon and he has a vent/trach and would do this gasp thing in between his words...I had alreayd thought it but Fred said it out loud...that sounded like that sometimes and without a trach...what do you make of that...kinda like the sudden intake or he can't keep talking...(I am a vocal coach and understand breathing but it isn't that) and I was wondering if that was intermittent air hunger they talk about...

anyway, I appreciate everyone's help

deb

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  • 1 year later...

n, you mean you'll be off the oxygen completely?? That is amazing.

I've had knee pain for about 15 years, loosing the cartilage. Last year it

got so bad, I thought I wouldn't be able to put the brake on in the car. I

did, but was in tears. I saw an orthopedist, who did an MRI and x-rays, and

told me what I think I already knew, arthritis. It still doesn't make sense

though that the pains were so sharp. It's only happened twice for about 4-5

days. So, take a pill, but unfortunately the pills prescribed are Ibuprofen

based. I had to explain this to my pcp. I had been told by the kidney

doctor to never take Ibuprofen because of the kidney problems. They said

that was all there was to take, so I haven't been taking anything,

especially since the surgery. The kidney doctor gave me a RX for something

else, but being leery of medications, I researched it first, and the side

effects and interactions with medications I was already taking was scary, so

I didn't get it.

But as I lose weight, the pain is less and less. I haven't had any pain in

one knee for several weeks, and only minimal in the other knee. So, when

you do see the doctor, if he/she prescribes medication, find out if it's

Ibuprofen based. I too hope it isn't anything major. Good luck.

Joan

LAP RNY 11/18/03

Dr. Higa, Fresno, CA

282pre-op/275surg/236/140

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