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In a message dated 1/23/2005 10:01:22 PM Eastern Standard Time,

northnr@... writes:

>

>

> Hi everyone. Had a question for everyone. seems to have caught a

> cold. Normally this would not be a problem except that she is not fully

> recovered from the pharyngeal flap surgery. She still cannot breathe through

her

> nose very effectively yet. I am wondering if this cold causes a swelling in

her

> throat, and she is very hoarse by the way, how the heck is she going to

> breathe. I am also worried about her lack of being able to expel phlegm really

> well. She just doesnt get teh hack it up and spit it out thing. What methods

or

> OTC or script drugs might help to thin the phlegm so she can get it out

> easier. Anyone have any advice or tricks? I am just so worried that this

will

> develop into pnuemonia.

>

> Kathy

>

--

Call and talk to your doctor.

Meanwhile, typically anything with an " expectorant " is good for getting the

phlegm up and out. Some conditions respond well to steam (like sitting in the

bathroom with the shower running on hot) and some conditions respond better to

dry cold air. Your doctor should be able to tell you which way to go. If you

need to use moist air a humidifier running at night in her room is also good.

- Becky

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Hi,

I agree- a doctor's visit is necessary. last year at xmas, amanda just had a

cold, but I took her to the dr and he immediately sent her for an x-ray and

without any symptoms, she had pnemonia. She took antibiotics and to help with

the phelgm we cupped our hand and lightly banged on her back and also rubbed

her back to help bring up some congestion.

this year, at the first hint of a cold, we brought her in. Thankfully, no

pnemonia, but it is something we have to watch with our kids especially if they

have low immunities.

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Hi,

I agree- a doctor's visit is necessary. last year at xmas, amanda just had a

cold, but I took her to the dr and he immediately sent her for an x-ray and

without any symptoms, she had pnemonia. She took antibiotics and to help with

the phelgm we cupped our hand and lightly banged on her back and also rubbed

her back to help bring up some congestion.

this year, at the first hint of a cold, we brought her in. Thankfully, no

pnemonia, but it is something we have to watch with our kids especially if they

have low immunities.

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Hi everyone. Had a question for everyone. seems to have caught a cold.

Normally this would not be a problem except that she is not fully recovered from

the pharyngeal flap surgery. She still cannot breathe through her nose very

effectively yet. I am wondering if this cold causes a swelling in her throat,

and she is very hoarse by the way, how the heck is she going to breathe. I am

also worried about her lack of being able to expel phlegm really well. She just

doesnt get teh hack it up and spit it out thing. What methods or OTC or script

drugs might help to thin the phlegm so she can get it out easier. Anyone have

any advice or tricks? I am just so worried that this will develop into

pnuemonia.

Kathy

Still havn;t dug my car out of the snow here in R.I.

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  • 5 years later...

If he's on oxygen without ventilation, they should be checking his blood gases.

I wouldn't be surprised if his O2 saturation is good and his CO2 is too high.

Is your brother lucid? He or your parents should insist that they be following

Dr. Bach's respiratory protocols. Keep us posted.

>

>

> My brother (also SMA II) has been in the hospital all week with pneumonia.

He's coded twice, and was intubated for a little while, but not now.

>

> They have him on oxygen, and they're suctioning.... But does it strike anyone

else as strange that they're not using bipap, or a cough assist, or anything

like that? I'm in a different state, but I keep bugging my parents about it, and

they timidly ask the doctors, but they're placated by whatever the doctors say.

The explanation came back to me as, " bipap pushes air in, and we're trying to

pull secretions out. " I'm not so convinced. His cough is really weak, and I

think he needs the help to get it out.

>

> I know there are lots of experts here on these sorts of matters. Any thoughts?

>

> Thanks!!

>

> e

>

>

>

>

>

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they should be using a bipap and cough assist

________________________________

From: " PurplGurl3@... " <PurplGurl3@...>

Sent: Sat, February 6, 2010 5:07:02 PM

Subject: pneumonia question

 

My brother (also SMA II) has been in the hospital all week with pneumonia. He's

coded twice, and was intubated for a little while, but not now.

They have him on oxygen, and they're suctioning.. .. But does it strike anyone

else as strange that they're not using bipap, or a cough assist, or anything

like that? I'm in a different state, but I keep bugging my parents about it, and

they timidly ask the doctors, but they're placated by whatever the doctors say.

The explanation came back to me as, " bipap pushes air in, and we're trying to

pull secretions out. " I'm not so convinced. His cough is really weak, and I

think he needs the help to get it out.

I know there are lots of experts here on these sorts of matters. Any thoughts?

Thanks!!

e

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Here is Dr Schroth's protocol and a link to a presentation she just

gave this week: http://nch.dataserv.tv/NCH/Catalog/

Suzanne

What's The News On ne & Latte? www.our-sma-angels.com/neRose

On Sat, Feb 6, 2010 at 5:07 PM, <PurplGurl3@...> wrote:

>

>

>

> My brother (also SMA II) has been in the hospital all week with pneumonia.

> He's coded twice, and was intubated for a little while, but not now.

>

> They have him on oxygen, and they're suctioning.... But does it strike

> anyone else as strange that they're not using bipap, or a cough assist, or

> anything like that? I'm in a different state, but I keep bugging my parents

> about it, and they timidly ask the doctors, but they're placated by whatever

> the doctors say. The explanation came back to me as, " bipap pushes air in,

> and we're trying to pull secretions out. " I'm not so convinced. His cough is

> really weak, and I think he needs the help to get it out.

>

> I know there are lots of experts here on these sorts of matters. Any

> thoughts?

>

> Thanks!!

>

> e

>

>

>

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Thank you.

 Lori

________________________________

From: Suzanne <erinnesmom@...>

Sent: Sat, February 6, 2010 6:41:00 PM

Subject: Re: pneumonia question

Here is Dr Schroth's protocol and a link to a presentation she just

gave this week: http://nch.dataserv.tv/NCH/Catalog/

Suzanne

What's The News On ne & Latte? www.our-sma-angels.com/neRose

On Sat, Feb 6, 2010 at 5:07 PM, <PurplGurl3@...> wrote:

>

>

>

> My brother (also SMA II) has been in the hospital all week with pneumonia.

> He's coded twice, and was intubated for a little while, but not now.

>

> They have him on oxygen, and they're suctioning.... But does it strike

> anyone else as strange that they're not using bipap, or a cough assist, or

> anything like that? I'm in a different state, but I keep bugging my parents

> about it, and they timidly ask the doctors, but they're placated by whatever

> the doctors say. The explanation came back to me as, " bipap pushes air in,

> and we're trying to pull secretions out. " I'm not so convinced. His cough is

> really weak, and I think he needs the help to get it out.

>

> I know there are lots of experts here on these sorts of matters. Any

> thoughts?

>

> Thanks!!

>

> e

>

>

>

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sorry let me try this again- my computer entered the post while I was typing....

If you guys already have the bipap or cough assist machines bring them in and

start using them.

Ask the hospital if the have a cough assist machine? bi paps? and any

Experience with the unique pulmonary issues of SMA?

Print up the families with sma medical quidelines and approach the drs with it

and discuss. Many drs have no clue about sma needs.

My hospitalized pnuemonia experience last month involved drs assuming I brought

a 30 pound cough assist with me- [duhhhh they had plenty on hand and if their

idiot staff broke or lost my machine I'd be screwed back at home later on]. I

had to literally teach and educate the attending dr with the FSMA hand outs.

Complacency can kill and if your parents feel to uncomfortible to take a

proactive approach they could at least enable conversation between you and your

brothers doctors. Whether in person, phone, or email.

>

> they should be using a bipap and cough assist

>

>

>

>

> ________________________________

> From: " PurplGurl3@... " <PurplGurl3@...>

>

> Sent: Sat, February 6, 2010 5:07:02 PM

> Subject: pneumonia question

>

>  

>

> My brother (also SMA II) has been in the hospital all week with pneumonia.

He's coded twice, and was intubated for a little while, but not now.

>

> They have him on oxygen, and they're suctioning.. .. But does it strike anyone

else as strange that they're not using bipap, or a cough assist, or anything

like that? I'm in a different state, but I keep bugging my parents about it, and

they timidly ask the doctors, but they're placated by whatever the doctors say.

The explanation came back to me as, " bipap pushes air in, and we're trying to

pull secretions out. " I'm not so convinced. His cough is really weak, and I

think he needs the help to get it out.

>

> I know there are lots of experts here on these sorts of matters. Any thoughts?

>

> Thanks!!

>

> e

>

>

>

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