Re: Nursing care

November 12, 2003

Hello!

congrats on your boy coming home. From vast experience with nursing care (13

years) please ask for more hours of nursing than you think you need...ask for

16 hours so that you can sleep and you can be with other members of your

family and then have 8 hours with your child. Your nursing care agency may not

even be able to provide a nurse for you due to the nursing shortage.You may be

able to go to 2 agencies at a time, at least I have done that for coverage. I

have lots of advice to impart, if you are interested.

, mother to Bradley (charge) and STephanie and wife to Tom....

November 12, 2003

Hello!

congrats on your boy coming home. From vast experience with nursing care (13

years) please ask for more hours of nursing than you think you need...ask for

16 hours so that you can sleep and you can be with other members of your

family and then have 8 hours with your child. Your nursing care agency may not

even be able to provide a nurse for you due to the nursing shortage.You may be

able to go to 2 agencies at a time, at least I have done that for coverage. I

have lots of advice to impart, if you are interested.

, mother to Bradley (charge) and STephanie and wife to Tom....

November 12, 2003

PS I have 8 hours a day for Bradley for Midnights and usually on the

weekends there is no nurse provided. He is stable but still needs lots of care.

He

does get sick and then I am really in need of help. I also work full time as a

teacher.

November 12, 2003

PS I have 8 hours a day for Bradley for Midnights and usually on the

weekends there is no nurse provided. He is stable but still needs lots of care.

He

does get sick and then I am really in need of help. I also work full time as a

teacher.

November 12, 2003

Hollie-

We only had nursing care for a brief period when Aubrie was an infant.

is right -- ask for more than you think you'll need. Our docs sent us home

without any help. After a few weeks of almost losing my mind, missing

medications, waking up with a wet diaper in my bed after changing her in my

sleep... our local ped helped us to get coverage from insurance. Then we went

thru the dept of human services for assistance. It required restructuring our

assets to qualify, but it was well worth it. Our family would not have survived

without some help. The schedule was more than I could handle. Aubrie was not

trached -- she only had an NG tube. That and a 2-hour feeding schedule combined

with breast pumping and severe reflux was more than I could take. Get help, use

it as best you can, go on dates with your spouse or spend time with family and

friends... keep your sanity cuz you will need it :-)

Michele w

mom to Aubrie (5 yrs) CHaRgE and (12 yrs)

Nursing care

Hi, my is coming home soon and i was wondering how many of

you get nursing help and how many hours you get?

Thanks so much

Hollie, mom to 3 months, charge and Brenna 17 months

November 13, 2003

anthony, my son is 4 months and trached, we started off with 3 days

of 24 hrs a day of nursing, then a week of 20 hr days, then 16 hour

days. we just lost our weekend nursing during the day, but we have

night nursing and day nursing during the week. it depends on your

ins, you really need it, my son has a ng tube and gets fed every 3

hours, we have had some days and nights and which there was no

nursing< they were sick, and i had to fire one> so i didn't get any

sleep and had a hard time getting my daughter from school that day.

once you do get nursing, make sure you can trust them, i thought my

son would be safe in the nurses care this past weekend, but i was

wrong, water from the trach collar dumped into him and he now is

running a fever and an infection. so get nursing just make sure that

they don't get forgetful and not watching your child and the

equipment. i have learned the hard way that i have to give the most

basic instructions to nurses who are supposed to know! night nursing

for us has been the most important, but if your son has a trach you

will need someone to ride with you to dr appt to suction on the drive.

jennifer

> Hollie-

> We only had nursing care for a brief period when Aubrie was an

infant. is right -- ask for more than you think you'll need.

Our docs sent us home without any help. After a few weeks of almost

losing my mind, missing medications, waking up with a wet diaper in

my bed after changing her in my sleep... our local ped helped us to

get coverage from insurance. Then we went thru the dept of human

services for assistance. It required restructuring our assets to

qualify, but it was well worth it. Our family would not have

survived without some help. The schedule was more than I could

handle. Aubrie was not trached -- she only had an NG tube. That and

a 2-hour feeding schedule combined with breast pumping and severe

reflux was more than I could take. Get help, use it as best you can,

go on dates with your spouse or spend time with family and friends...

keep your sanity cuz you will need it :-)

>

> Michele w

> mom to Aubrie (5 yrs) CHaRgE and (12 yrs)

> Nursing care

>

> Hi, my is coming home soon and i was wondering how many

of

> you get nursing help and how many hours you get?

>

> Thanks so much

> Hollie, mom to 3 months, charge and Brenna 17 months

>

November 14, 2003

Hi Hollie,

When our daughter had a trach that presented special difficulties

because of the stenosis in her throat, we had 24 hour nursing 7 days a

week. The nurses were primarily RN, but we did have some great LPNs

every once in a while who were trained in trach care. She also had a

g-tube that kept causing ulcerations and she required very small

feedings or drip feedings at that time.

When our daughter's needs became less critical at 11 months, we reduced

hours gradually over the next 6 months. We kept one or two nights per

week with nursing care as she needed to be watched 24/7. The one or two

nights per week allowed us to get some sleep. By 15 or 18 months she no

longer had any home nursing care and kept her trach until she was three

years old.

Best of luck with coming home!

Mom to Kendra, CHARGE, and Camille

Nursing care

Hi, my is coming home soon and i was wondering how many of

you get nursing help and how many hours you get?

Thanks so much

Hollie, mom to 3 months, charge and Brenna 17 months

November 15, 2003

I can relate so much to the mother who just wrote about nursing.We have had

nursing all of Brads life (13 years so far) You will have some winners and

some real losers...yes, trust your instincts and check in on them. I have so

many

crazy nurse stories but I have many nurses who actually became great friends

of mine. Right now there is one that I actually hired myself 7 years ago

because the agency was not providing enough. This particular individual is a

gem

and she loves my boy and our whole family. Since I have hired her she is able

to take him to her home and really give me a break. He can play with her kids

and it works out great.

Good luck. Remember to take care of yourself and your other family members.

Let the nurses do their job and try to get out and about with your

husband....When Brad was young (and his older sister, too) I used to be so

worried about

leaving the house with a nurse but it always worked out fine.

It gets easier as the years pass. ck

November 15, 2003

I can relate so much to the mother who just wrote about nursing.We have had

nursing all of Brads life (13 years so far) You will have some winners and

some real losers...yes, trust your instincts and check in on them. I have so

many

crazy nurse stories but I have many nurses who actually became great friends

of mine. Right now there is one that I actually hired myself 7 years ago

because the agency was not providing enough. This particular individual is a

gem

and she loves my boy and our whole family. Since I have hired her she is able

to take him to her home and really give me a break. He can play with her kids

and it works out great.

Good luck. Remember to take care of yourself and your other family members.

Let the nurses do their job and try to get out and about with your

husband....When Brad was young (and his older sister, too) I used to be so

worried about

leaving the house with a nurse but it always worked out fine.

It gets easier as the years pass. ck

November 15, 2003

> Hi, my is coming home soon and i was wondering how many of

> you get nursing help and how many hours you get?

>

> Thanks so much

> Hollie, mom to 3 months, charge and Brenna 17 months

Hello,

Congrads on your baby..When my C.H.A.R.G.E.r was alive he had a trach

and a g-tube ..We had 16 hours a day nursing care.. the hours you get depend on

a LOT of things...

was considered high tech RN in one county and low tech LPN in

another (you figure that out we moved and it changed his status I still havent

figured that one out)anyways that is just a matter of how much the nurses get

paid per hour...so you want the docs to (or nursing agency) to push your child

to the highest level possible because I know for a fact a lot of nurses will

only do high tech cases!!!!!

Nurses in your house are a pain in the a@@ but you really reaaly should

have them at least 8 hours at night (and for sanity 16 a day is a good amout)

...You realy have to pay attention to who is in your house to I have had nurses

make stupid mistakes,( one blew s nissen out bolusing him to fast) get in

between me and my child ( one would stand over us and stare at us if we were

snuggling/sleeping when she got there) and we even had one rob his piggy

bank!!!!!! (I could go on and on with the horror storys) but not all are bad

once I learned to trust MY instincts about them and got it threw my head HAVING

NO NURSE IS BETTER THEN A BAD NURSE and started refusing the bad ones.. youll be

fine..Just remeber you know your child better then them dont let them make you

feel other wise.. most have never seen a CHARGE kid

Mom to C.H.A.R.G.E.r 9/30/01-8/03/03 and 03/27/03

November 15, 2003