Re: Pneumonia, trachs and feeding tubes

[Guest guest]

Venla,

Are you able to breathe off the vent? I was trached when I was 20 yrs old

and I was a Jr in college. I got very sick, had surgery and could not be

extubated. I was in the hospital for exactly 6 months. I qualified for 16

hours

of nursing a day, and with the help of friends and family I was able to live

at college and finish my degree. I am now only on the vent when sleeping.

I'd say the biggest change in my life from getting trached was that I should

never be left alone. You never know when the vent tubing can disconnect or

if you need suction. Before getting trached I only qualified for 4 hours of

PCA hrs a day. Now I have 16 hrs a day of a nurse. I'm very lucky that I do

not require much suction and can breathe on my own, so I am sometimes left

alone for short periods of time. Since I basically need someone with me 24/7

and only get 16 hrs of nursing a day, I had to move back home with my parents

while in grad school. If anything, I'd say the lack of independence is what

bothers me the most in regards to the trach/vent.

I also got a feeding tube during the same admission. I can still eat, so I

only use the tube for meds and supplemental feedings at night while in bed.

There are times when I can't eat and need more feedings. I then carry the

feeding pump with me. I just have it in a little backpack that hangs on my

chair. The feeding tube wasn't as big of a change compared to the trach.

Really the only change was that I had a tube in my abdomen. I do not have a

peg

tube. I have what's called a low profile button called a Mic-key. I am able

to disconnect the tubes that hang w/a Mic-key.

Why are you getting shots to prevent clotting? Did you have a DVT or some

other type of clot? The only time I got shots for clots was when I was in the

hospital for having a DVT. I got it from my birth control pills. After I

was discharged I was put on the blood thinning med Coumadin. I then got

weekly blood draws to check my PT INR levels. After a year I was taken off the

med b/c I did not get another clot.

Although I have a trach and feeding tube, I still can do " normal " things

like go to school and shop. Hope this helps. Feel free to ask any questions.

Kimi

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Visit my myspace page and blogs: _ www.myspace.com/ksmile96_

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" We come to love not by finding a perfect person but by learning to see an

imperfect person perfectly " - San Keen

In a message dated 12/1/2008 8:04:49 A.M. Eastern Standard Time,

wepsi@... writes:

I travelled to Las Vegas a month ago to meet friends and to get over

Taya's death. A few days later I found myself in ER with breathing

problems. I had got pneumonia (first one in 20 years), and they had to

put a trach on me, since intubation didn't work. Now I'm back in

Finland and the pneumonia is gone, after a few weeks in the ICU in

Vegas. I have to keep the trach and the feeding tube until further

notice, which means more time in the hospital. With bad luck they are

permanent.

I don't have any previous experience on trachs or feeding tubes, so

I'm wondering what will happen if they are permanent. Can anyone here

tell me about " normal " life with them, especially the peg-tube? Do you

take the shots daily to prevent clotting? Where do you keep the

bottles when it's feeding time? How about when you are on the go

(since I need to go to classes and go shopping)? I've had enough of

hospitals, so I'd rather go home already.

- Venla R

SMA 2

**************Life should be easier. So should your homepage. Try the NEW

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[Guest guest]

Get well fast!

Hugs

>

> I travelled to Las Vegas a month ago to meet friends and to get over

> Taya's death. A few days later I found myself in ER with breathing

> problems. I had got pneumonia (first one in 20 years), and they had

to

> put a trach on me, since intubation didn't work. Now I'm back in

> Finland and the pneumonia is gone, after a few weeks in the ICU in

> Vegas. I have to keep the trach and the feeding tube until further

> notice, which means more time in the hospital. With bad luck they

are

> permanent.

> I don't have any previous experience on trachs or feeding tubes, so

> I'm wondering what will happen if they are permanent. Can anyone

here

> tell me about " normal " life with them, especially the peg-tube? Do

you

> take the shots daily to prevent clotting? Where do you keep the

> bottles when it's feeding time? How about when you are on the go

> (since I need to go to classes and go shopping)? I've had enough of

> hospitals, so I'd rather go home already.

>

> - Venla R

> SMA 2

>

[Guest guest]

I had to keep my second trach when I was 17 y/o (resp failure). Had a FTube also

that came out in about two years. I am very thankful to have kept the trach so

when I am sick and assisted coughs are ineffective, I can easily suction thru my

trach. I've mentioned my custom-made trach button before which my husband

designed. There is a photo in the file section on the SMAFriends site. It was

made for me at no cost by a local machine shop. It is easy to care for and I get

sick less often than with a regular trach.

Best wishes to you!

Lori

Sent from my Verizon BlackBerry

Re: Pneumonia, trachs and feeding tubes

Get well fast!

Hugs

>

> I travelled to Las Vegas a month ago to meet friends and to get over

> Taya's death. A few days later I found myself in ER with breathing

> problems. I had got pneumonia (first one in 20 years), and they had

to

> put a trach on me, since intubation didn't work. Now I'm back in

> Finland and the pneumonia is gone, after a few weeks in the ICU in

> Vegas. I have to keep the trach and the feeding tube until further

> notice, which means more time in the hospital. With bad luck they

are

> permanent.

> I don't have any previous experience on trachs or feeding tubes, so

> I'm wondering what will happen if they are permanent. Can anyone

here

> tell me about " normal " life with them, especially the peg-tube? Do

you

> take the shots daily to prevent clotting? Where do you keep the

> bottles when it's feeding time? How about when you are on the go

> (since I need to go to classes and go shopping)? I've had enough of

> hospitals, so I'd rather go home already.

>

> - Venla R

> SMA 2

>

[Guest guest]

I've always had trouble with mucus, so I'm actually considering keeping it so I

can be suctioned. I'll have to check out your trach button, thanks.

Lainaus Lori <lorig713@...>:

> I had to keep my second trach when I was 17 y/o (resp failure). Had a FTube

> also that came out in about two years. I am very thankful to have kept the

> trach so when I am sick and assisted coughs are ineffective, I can easily

> suction thru my trach. I've mentioned my custom-made trach button before

> which my husband designed. There is a photo in the file section on the

> SMAFriends site. It was made for me at no cost by a local machine shop. It is

> easy to care for and I get sick less often than with a regular trach.

>

> Best wishes to you!

> Lori

> Sent from my Verizon BlackBerry

>

> Re: Pneumonia, trachs and feeding tubes

>

>

>

> Get well fast!

>

> Hugs

>

>

>

>

> >

> > I travelled to Las Vegas a month ago to meet friends and to get over

> > Taya's death. A few days later I found myself in ER with breathing

> > problems. I had got pneumonia (first one in 20 years), and they had

> to

> > put a trach on me, since intubation didn't work. Now I'm back in

> > Finland and the pneumonia is gone, after a few weeks in the ICU in

> > Vegas. I have to keep the trach and the feeding tube until further

> > notice, which means more time in the hospital. With bad luck they

> are

> > permanent.

> > I don't have any previous experience on trachs or feeding tubes, so

> > I'm wondering what will happen if they are permanent. Can anyone

> here

> > tell me about " normal " life with them, especially the peg-tube? Do

> you

> > take the shots daily to prevent clotting? Where do you keep the

> > bottles when it's feeding time? How about when you are on the go

> > (since I need to go to classes and go shopping)? I've had enough of

> > hospitals, so I'd rather go home already.

> >

> > - Venla R

> > SMA 2

> >

>

>

>

>

>

>

[Guest guest]

I haven't been vented most of the time, just on extra oxygen (which I don't

really need). I still need a lot of suctioning, but it depends on the day. If I

was vented, I'd get assistance 24/7 easily, but with just the trach I have no

clue if that could be organized.

I haven't had a clot that I know of. Like I said, I don't know much about

feeding tubes so I didn't know it wasn't normal.

Now it's starting to look like the trach will be more or less permanent, which I

really don't mind, and the peg-tube as well to some rate. That'll be a bigger

problem, since my stomach doesn't like the liquid I'm getting. I have a

dairy-allergy and there's only one choice of non-dairy feeding liquid here.

- Venla R

SMA 2

Lainaus Ksmile96@...:

> Venla,

> Are you able to breathe off the vent? I was trached when I was 20 yrs old

> and I was a Jr in college. I got very sick, had surgery and could not be

> extubated. I was in the hospital for exactly 6 months. I qualified for 16

> hours

> of nursing a day, and with the help of friends and family I was able to live

>

> at college and finish my degree. I am now only on the vent when sleeping.

>

> I'd say the biggest change in my life from getting trached was that I should

>

> never be left alone. You never know when the vent tubing can disconnect or

>

> if you need suction. Before getting trached I only qualified for 4 hours of

>

> PCA hrs a day. Now I have 16 hrs a day of a nurse. I'm very lucky that I

> do

> not require much suction and can breathe on my own, so I am sometimes left

> alone for short periods of time. Since I basically need someone with me

> 24/7

> and only get 16 hrs of nursing a day, I had to move back home with my

> parents

> while in grad school. If anything, I'd say the lack of independence is what

>

> bothers me the most in regards to the trach/vent.

>

> I also got a feeding tube during the same admission. I can still eat, so I

>

> only use the tube for meds and supplemental feedings at night while in bed.

>

> There are times when I can't eat and need more feedings. I then carry the

> feeding pump with me. I just have it in a little backpack that hangs on my

>

> chair. The feeding tube wasn't as big of a change compared to the trach.

> Really the only change was that I had a tube in my abdomen. I do not have a

> peg

> tube. I have what's called a low profile button called a Mic-key. I am

> able

> to disconnect the tubes that hang w/a Mic-key.

>

> Why are you getting shots to prevent clotting? Did you have a DVT or some

> other type of clot? The only time I got shots for clots was when I was in

> the

> hospital for having a DVT. I got it from my birth control pills. After I

> was discharged I was put on the blood thinning med Coumadin. I then got

> weekly blood draws to check my PT INR levels. After a year I was taken off

> the

> med b/c I did not get another clot.

>

> Although I have a trach and feeding tube, I still can do " normal " things

> like go to school and shop. Hope this helps. Feel free to ask any

> questions.

>

>

> Kimi

>

> }i{

> Visit my myspace page and blogs: _ www.myspace.com/ksmile96_

> (http://www.myspace.com/ksmile96) }i{

>

> " We come to love not by finding a perfect person but by learning to see an

> imperfect person perfectly " - San Keen

>

>

>

> In a message dated 12/1/2008 8:04:49 A.M. Eastern Standard Time,

> wepsi@... writes:

>

>

>

>

> I travelled to Las Vegas a month ago to meet friends and to get over

> Taya's death. A few days later I found myself in ER with breathing

> problems. I had got pneumonia (first one in 20 years), and they had to

> put a trach on me, since intubation didn't work. Now I'm back in

> Finland and the pneumonia is gone, after a few weeks in the ICU in

> Vegas. I have to keep the trach and the feeding tube until further

> notice, which means more time in the hospital. With bad luck they are

> permanent.

> I don't have any previous experience on trachs or feeding tubes, so

> I'm wondering what will happen if they are permanent. Can anyone here

> tell me about " normal " life with them, especially the peg-tube? Do you

> take the shots daily to prevent clotting? Where do you keep the

> bottles when it's feeding time? How about when you are on the go

> (since I need to go to classes and go shopping)? I've had enough of

> hospitals, so I'd rather go home already.

>

> - Venla R

> SMA 2

>

>

>

>

> **************Life should be easier. So should your homepage. Try the NEW

> AOL.com.

>

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000002)

>

>

>