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Re: The vest

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Jill, I live in Basking Ridge, NJ. What hospital does your niece go to?

As far as the vest is concerned my daughter did not get one until she was 18

years old and it is the only thing that has ever worked for her. The acapella

does not do anything for her unfortunately, it is so much easier to travel

with.

T. Dunn

CTDUNN1@...

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Kris is 21 and a senior at Boston College. town Memorial is where Kris

was born, but we have always gone into New York for a pulmonary doctor. We

have left the Ped Clinic at Mt. Sinai twice for various reasons but have always

done back. She was recently in the hospital in Mt. Sinai and had a problem with

getting clean nebulizers. The nurses (on the hospital floors not the clinic

nurse) seem to think you could use one neb for 24 hours for pulmo, TOBI,

Albuterol and saline. We ended up bringing our own clean nebulizers with us.

Also I

was told to bring the vest with us (not the machine) so that we would have a

clean vest. Should she be in the hospital again I am also going to bring the

tubes also. Kris was most unhappy with the dirt on the tubing.

Another thing I might mention,if she is in the process of getting a new vest

machine, be sure that it is the 104 model that weighs 17 lb. not the 103 that

weighs 35 lb. Kris would love to have the lighter one.

Sorry I am rambling on.

Good Luck

T. Dunn

CTDUNN1@...

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Hi,

She was in town Memorial at the new Children's Hospital. I think she uses

the acapella after her percussion and " huffing " . As far as I know she won't ever

be using it as a substitute, only as an adjunct.

Thank you for your comments about the vest. After they get settled into a

routine and things aren't so fresh, I will talk with her about using the vest

more than the manual percussion. I can't imagine the physical and emotional

stress of having to pound each lobe area several times daily. I saw the vest at

the time they were shown how to use it and it seems so much easier all around.

They don't use it in the hospital; they have the RT's do it exclusively by hand.

You mentioned that your daughter didn't get the vest til she was 18. How old is

she now?

Jill

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Funny you should mention NY. My brother has said he thinks my sister should to

to NY for another opinion. I think he has the name of a pulmonologist there and

I believe he's at a cf center. I think my sister needs time to process all of

this and to get a routine going where they can work treatments around a busy

schedule. However, I tend to agree that a trip to NY might be prudent if for no

other reason than to be sure all is being done than can and should be done.

Since the 1st " tune-up " is done, it can wait a few months. NY will be there and

my niece is getting her daily treatments and frequent doctor visits for

monitoring.

As for the vest, they do have the new, lighter version. They just got it as my

niece was getting ready for discharge! I just hope they will use it more

frequently. But, as I said earlier, I will broach that subjet with them but not

quite yet.

Thanks, again, .

Jill

Re: The vest

Kris is 21 and a senior at Boston College. town Memorial is where Kris

was born, but we have always gone into New York for a pulmonary doctor. We

have left the Ped Clinic at Mt. Sinai twice for various reasons but have

always

done back. She was recently in the hospital in Mt. Sinai and had a problem

with

getting clean nebulizers. The nurses (on the hospital floors not the clinic

nurse) seem to think you could use one neb for 24 hours for pulmo, TOBI,

Albuterol and saline. We ended up bringing our own clean nebulizers with us.

Also I

was told to bring the vest with us (not the machine) so that we would have a

clean vest. Should she be in the hospital again I am also going to bring the

tubes also. Kris was most unhappy with the dirt on the tubing.

Another thing I might mention,if she is in the process of getting a new vest

machine, be sure that it is the 104 model that weighs 17 lb. not the 103 that

weighs 35 lb. Kris would love to have the lighter one.

Sorry I am rambling on.

Good Luck

T. Dunn

CTDUNN1@...

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