pseudomonas, hospital stays, Asthma, Home IV's

[Guest guest]

In a message dated 9/21/2003 10:09:12 AM Central Daylight Time,

jedo@... writes:

Also if you get to come home on IV's do you do it yourself or is there a home

health nurse coming in. Also if you do it yourself is it easy to do? Well,

I want to run back up. Hopefully I will be able to check my email tomorrow

sometime. Thanks in advance for anything at all.

Dottie

We have done home IV we have done two different kinds of pumps and both of

them have been easy to do. The home health nurse would come to show us how to

operate the IV pump and she would do dressing changes. They would only come

about once or twice a week. Hope this helps. Deb A

[Guest guest]

Hi,

My six year cultured just a very small amount of pseudomonas at the end of

August. She was put on aerosolized Tobi and Cipro. She started first grade and

wound up with a cold which seemed to aggravate her asthma. We were admitted

yesterday because her sats were 91% and she had a bit of wheezing. I am staying

at the hospital with her which is ten minutes away so I just ran home for a

quick shower but wanted to ask how quick do you normally see some improvement.

I am a wreck with her being in. She is in very good spirits. This is her

second stay. She hadn't been put in since she was two months old. Those of you

with kids with Asthma on top of your CF, do maintenance drugs like pulmicort

really help. She was started on that yesterday. Also if you get to come home

on IV's do you do it yourself or is there a home health nurse coming in. Also

if you do it yourself is it easy to do? Well I want to run back up. Hopefully

I will be able to check my email tomorrow sometime. Thanks in advance for

anything at all.

Dottie

Mom to three boys all WO/CF and is with CF and Asthma

[Guest guest]

Hi Dottie,

hasn't been in for nearly 3 years but I did home IV's with her 3 times.

For the first dose they had the home healthcare nurse come in and she came in a

few times after that at different times, but I was primarily responsible for

them. I didn't think it was very hard to do. You just have to take your time

and be careful. doesn't have asthma so I am no help there.

Mom of , nearly 5 with CF

pseudomonas, hospital stays, Asthma, Home IV's

Hi,

My six year cultured just a very small amount of pseudomonas at the end of

August. She was put on aerosolized Tobi and Cipro. She started first grade and

wound up with a cold which seemed to aggravate her asthma. We were admitted

yesterday because her sats were 91% and she had a bit of wheezing. I am staying

at the hospital with her which is ten minutes away so I just ran home for a

quick shower but wanted to ask how quick do you normally see some improvement.

I am a wreck with her being in. She is in very good spirits. This is her

second stay. She hadn't been put in since she was two months old. Those of you

with kids with Asthma on top of your CF, do maintenance drugs like pulmicort

really help. She was started on that yesterday. Also if you get to come home

on IV's do you do it yourself or is there a home health nurse coming in. Also

if you do it yourself is it easy to do? Well I want to run back up. Hopefully

I will be able to check my email tomorrow sometime. Thanks in advance for

anything at all.

Dottie

Mom to three boys all WO/CF and is with CF and Asthma

[Guest guest]

I always was afraid of home IV's...its NOT that difficult. Honest! I prefer

it to hospital stay! Trust me you can do it. They send a home care nurse

every other or every 2 days....it probably is determined by your insurance.

They can even draw blood and test tobi levels!

It scary at first but not as bad as it sounds!!!

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Hi Dottie,

I am very sorry to hear your daughter is sick and has been admitted. If you do

home IV's you do them yourself. There are several kinds of systems for them,

you won't have the big pump and pole like in the hospital. We have had the

intermates which look like baby bottles with balloons inside, the antibiotic is

in the balloon and when you hook it up to her IV it infuses itself and deflates.

You don't have to do anything except make sure it is flowing OK and don't forget

to unclamp it! We have also had syringe pumps which I liked better, the

antibiotic comes in a big (50 cc) syringe which fits into a little pump. I like

those better because they beep when they are done or if something is wrong.

I've heard of other systems but those are the 2 we have used. It is very easy

once you get the hang of it which doesn't take long. The nurse will probably

stay for your first time. And they are always just a phone call away if you

forget something or need any help. About maintenance drugs for asthma I think

they are very helpful. A big problem with asthma is inflammation and the drugs

like pulmicort reduce inflammation. My daughter is 19 and she was just in the

hospital a couple of weeks ago, she was on pulmicort while there, that was the

first time she has ever been on it,. but they said her flovent was fine and she

didn't need to be on pulmicort at home, I was glad because it made 4 different

treatments, thats a lot!

hope this helps, good luck and hope your daughter feels better soon. I'm sure

she will!

love,

M

mom of age 19 wcf and Nick age 21 nocf

[Guest guest]

In a message dated 9/21/2003 11:31:11 PM Central Daylight Time,

Ashauna_and_@... writes:

Question about home Iv's. My son is only 8 months old so I guess that I

just assumed that we had to stay at the hospital. Do you have to

request to go home or do the doctors tell you if it is ok to bring them

home. Perhaps there is an age limit. I am just home all by myself my

hubby away at war and if I have to go to hospital when my oldest gets

home from family visit I do not think that he will be able to handle

staying at hospital for 2 weeks. Just a question. I do not have to do

anti. this time at hospital.

Oh yeah I forgot to tell you all that Colgan has to go back again.

This time for further testing as to why he is not absorbing his foods.

Also feeding issues again. Man I am so sick of that place. 5 times in

8 months does it get better? I feel so bad for him it seems like we

are out for a month and then back in again. I just want to scream all

the time and he is doing his share of screaming because he is hurting so

bad. Please pray that they find an answer this time for him that will

keep us out for a long time.

I will miss my evenings with all of your posts.

Hope that you all stay well

Ashauna mom to Colgan and Maxwel

We told them we want to do it at home because our oldest hated to stay in the

hospital and they were find with it. So I would ask them if you could. Deb A

[Guest guest]

Question about home Iv's. My son is only 8 months old so I guess that I

just assumed that we had to stay at the hospital. Do you have to

request to go home or do the doctors tell you if it is ok to bring them

home. Perhaps there is an age limit. I am just home all by myself my

hubby away at war and if I have to go to hospital when my oldest gets

home from family visit I do not think that he will be able to handle

staying at hospital for 2 weeks. Just a question. I do not have to do

anti. this time at hospital.

Oh yeah I forgot to tell you all that Colgan has to go back again.

This time for further testing as to why he is not absorbing his foods.

Also feeding issues again. Man I am so sick of that place. 5 times in

8 months does it get better? I feel so bad for him it seems like we

are out for a month and then back in again. I just want to scream all

the time and he is doing his share of screaming because he is hurting so

bad. Please pray that they find an answer this time for him that will

keep us out for a long time.

I will miss my evenings with all of your posts.

Hope that you all stay well

Ashauna mom to Colgan and Maxwel

[Guest guest]

Deb A thank you

I am hoping that they do not try to put him on anti. this visit as

it is not related to lung exaspiration. Only stomach issues. Not that

it is " only stomach issues " but you all know what I mean.

I will let you all know soon what they come up with.

Ashauna

[Guest guest]

In a message dated 9/22/2003 7:38:30 AM Central Daylight Time,

gale.harris@... writes:

Gale

How did she bruise Abby? Because when my daughter had PICC line they just

drew the blood from her PICC line there wasn't any poking. Deb A

[Guest guest]

Ashauna,

I think the doc gets to decide at Colgan's age. When came home on home

IV's the first time her doc had never sent anyone so little home on IV's. She

was under 18 months at the time. He knew that both and I had had enough

of the hospital and I think he felt bad for us. He also knew that I would be ok

doing it. They had me take a " class " with other parents who would be doing home

IV's and the home healthcare nurse was there for the first infusion when we got

home.

I'm sorry that you and Colgan have to go in again. I will keep you in my

thoughts.

Re: pseudomonas, hospital stays, Asthma, Home IV's

Question about home Iv's. My son is only 8 months old so I guess that I

just assumed that we had to stay at the hospital. Do you have to

request to go home or do the doctors tell you if it is ok to bring them

home. Perhaps there is an age limit. I am just home all by myself my

hubby away at war and if I have to go to hospital when my oldest gets

home from family visit I do not think that he will be able to handle

staying at hospital for 2 weeks. Just a question. I do not have to do

anti. this time at hospital.

Oh yeah I forgot to tell you all that Colgan has to go back again.

This time for further testing as to why he is not absorbing his foods.

Also feeding issues again. Man I am so sick of that place. 5 times in

8 months does it get better? I feel so bad for him it seems like we

are out for a month and then back in again. I just want to scream all

the time and he is doing his share of screaming because he is hurting so

bad. Please pray that they find an answer this time for him that will

keep us out for a long time.

I will miss my evenings with all of your posts.

Hope that you all stay well

Ashauna mom to Colgan and Maxwel

[Guest guest]

Ashauna,

I am sorry to hear that you have to go back to the hospital again.

Will the military consider bringing your husband home early, due to

your special circumstances?

Do you stay at the hospital or at home with your other child? This

is a terrible position for you to deal with. I hope that Colgan gets

some relief very soon. You both deserve it!

Gale

> Question about home Iv's. My son is only 8 months old so I guess

that I

> just assumed that we had to stay at the hospital. Do you have to

> request to go home or do the doctors tell you if it is ok to bring

them

> home. Perhaps there is an age limit. I am just home all by myself

my

> hubby away at war and if I have to go to hospital when my oldest

gets

> home from family visit I do not think that he will be able to handle

> staying at hospital for 2 weeks. Just a question. I do not have

to do

> anti. this time at hospital.

> Oh yeah I forgot to tell you all that Colgan has to go back

again.

> This time for further testing as to why he is not absorbing his

foods.

> Also feeding issues again. Man I am so sick of that place. 5

times in

> 8 months does it get better? I feel so bad for him it seems like

we

> are out for a month and then back in again. I just want to scream

all

> the time and he is doing his share of screaming because he is

hurting so

> bad. Please pray that they find an answer this time for him that

will

> keep us out for a long time.

> I will miss my evenings with all of your posts.

> Hope that you all stay well

> Ashauna mom to Colgan and Maxwel

[Guest guest]

Abby was 3 months old when she came home from the hospital with a

PICC line and IV antibiotics. It was a little scarey at first, but

MUCH MUCH better than being in the hospital. We had a bad home

health care nurse. She bruised Abby's foot (deep purple and black),

from the bottom of her foot to several inches above her ankle. We

should have stopped her, but we were inexperienced. THAT won't

happen again. We wouldn't even let a home health care nurse draw

blood again. We would just drive her to the clinic for the blood

draws. Live and learn, I guess.

Good luck with Colgan.

Gale

> Question about home Iv's. My son is only 8 months old so I guess

that I

> just assumed that we had to stay at the hospital. Do you have to

> request to go home or do the doctors tell you if it is ok to bring

them

> home. Perhaps there is an age limit. I am just home all by myself

my

> hubby away at war and if I have to go to hospital when my oldest

gets

> home from family visit I do not think that he will be able to handle

> staying at hospital for 2 weeks. Just a question. I do not have

to do

> anti. this time at hospital.

> Oh yeah I forgot to tell you all that Colgan has to go back

again.

> This time for further testing as to why he is not absorbing his

foods.

> Also feeding issues again. Man I am so sick of that place. 5

times in

> 8 months does it get better? I feel so bad for him it seems like

we

> are out for a month and then back in again. I just want to scream

all

> the time and he is doing his share of screaming because he is

hurting so

> bad. Please pray that they find an answer this time for him that

will

> keep us out for a long time.

> I will miss my evenings with all of your posts.

> Hope that you all stay well

> Ashauna mom to Colgan and Maxwel

[Guest guest]

The Columbus CF Care Center says that you can not draw blood from a

PICC line. I don't remember why. I'll ask Toni and let you know.

Anyway, she poked Abby's foot and then sqeezed it hard until enough

blood came out to catch in a vial. Nasty woman!

Gale

> In a message dated 9/22/2003 7:38:30 AM Central Daylight Time,

> gale.harris@h... writes:

> Gale

> How did she bruise Abby? Because when my daughter had PICC line

they just

> drew the blood from her PICC line there wasn't any poking. Deb A

>

>

>

[Guest guest]

They were probably testing her levels in the blood. They won't take a blood

draw from the picc because their may be residual med in the line so they have to

do the prick and squeeze method or a regular draw from another site. has

had a lot of the prick and squeeze method. Usually if they prick right they

shouldn't have to squeeze so hard that they leave bruises though!!!!!!!

has never had actual bruises from these draws, just a spot as if she had a

regular draw.

Re: pseudomonas, hospital stays, Asthma, Home IV's

The Columbus CF Care Center says that you can not draw blood from a

PICC line. I don't remember why. I'll ask Toni and let you know.

Anyway, she poked Abby's foot and then sqeezed it hard until enough

blood came out to catch in a vial. Nasty woman!

Gale

> In a message dated 9/22/2003 7:38:30 AM Central Daylight Time,

> gale.harris@h... writes:

> Gale

> How did she bruise Abby? Because when my daughter had PICC line

they just

> drew the blood from her PICC line there wasn't any poking. Deb A

>

>

>

[Guest guest]

Hi - In regards to the asthma maintenance meds: my 5 yr. old with cf

and asthma started pulmicort about 1 year ago and it has truly made a

world of difference. He used to be on flovent and it helped but not

like this. Singulair has also helped. The dosage of pulmicort and

the frequence changes based on the time of year and his need. I hope

she is feeling better soon. has cultured pseud. before and

the TOBI has taken care of it. When the colony size was fairly

significant, he also used cipro. Take Care! Jo Ann

In cfparents , " Dottie " <jedo@a...> wrote:

> Hi,

> My six year cultured just a very small amount of pseudomonas at the

end of August. She was put on aerosolized Tobi and Cipro. She

started first grade and wound up with a cold which seemed to

aggravate her asthma. We were admitted yesterday because her sats

were 91% and she had a bit of wheezing. I am staying at the hospital

with her which is ten minutes away so I just ran home for a quick

shower but wanted to ask how quick do you normally see some

improvement. I am a wreck with her being in. She is in very good

spirits. This is her second stay. She hadn't been put in since she

was two months old. Those of you with kids with Asthma on top of

your CF, do maintenance drugs like pulmicort really help. She was

started on that yesterday. Also if you get to come home on IV's do

you do it yourself or is there a home health nurse coming in. Also

if you do it yourself is it easy to do? Well I want to run back up.

Hopefully I will be able to check my email tomorrow sometime. Thanks

in advance for anything at all.

> Dottie

> Mom to three boys all WO/CF and is with CF and Asthma

>

>

>

[Guest guest]

She hadn't been put in since she

> was two months old. Those of you with kids with Asthma on top of

> your CF, do maintenance drugs like pulmicort really help. She was

> started on that yesterday. Also if you get to come home on IV's do

> you do it yourself or is there a home health nurse coming in. Also

> if you do it yourself is it easy to do? Well I want to run back up.

> Hopefully I will be able to check my email tomorrow sometime. Thanks

> in advance for anything at all.

> > Dottie

> > Mom to three boys all WO/CF and is with CF and Asthma

> >

> >

> >