Re: Hospital stay for my DD (3) and I....what to bring? How long?

May 8, 2008

In a message dated 5/8/2008 11:07:46 A.M. Eastern Standard Time,

lpizzillo@... writes:

I don't see how on earth she'd get out

in 2 days since she has to lay flat for 48 hours so I'm figuring 3

days at the least. How long did you or your kids have to stay in?

was in two days the first time. He was flat 48 hours, then was

allowed upright and activity as tolerated. Granted, he was only four months

old

and couldn't really DO anything, LOL... The second one was along with his

spinal fusion, so he was flat for 48 hours again, then slowly started raising

the

bed, and then sitting up later that day. His activity was self limited due

to pain of spinal fusion, so he took it easy. We were in six days that time,

but mainly due to fusion.

What do we need? They told me to bring a lot of movies for her. I'm

going to bring some books to read. Of course her favorite blanket

and toys that she loves and normally sleeps with.

If you have a portable DVD player and/or music player, they are helpful. We

had a problem with due to the cartoons during daytime all being geared

toward younger children, so movies came in handy. When he was still in a

lot of pain, the music from iPod (I had portable speakers for it) really came

in handy to calm him down. Any hand held games or toys, small figurines, etc.

are good... The favorite loveys are a must, of course.

But what else? Will she wear the hospital gown the whole time? Or

when she's able to get up and go to the playrooms (they mentioned

doing that) will she be in her own jammies? Socks for her? Do I

need to bring snacks? (She's a picky eater)

Getting to the playroom will depend on how she does, and how long you

stay... obviously it won't be during that first 48 hours If they need her

to

stay longer then you may... We always used hospital gowns the whole time, just

SO much easier, plus not on incision line... WIth the IVs, getting into and

out of jammies can be a pain, not to mention getting them dirty with bodily

fluids... You can put one on backwards like a robe to cover back opening.

Socks are a great idea, and maybe slippers if you don't have the non skid ones.

The hospital gave us some, but ya never know. As for food, anything you can

bring to tempt her to eat once she is allowed off clears can be good if they

are picky. The meds do interfere with the appetite.

What about for myself? I'll be staying overnight and I think they

provide sheets, but what about a blanket and pillow? I'm bringing

toiletries, a book for me, comfy clothes, etc. What else would I

need?

I always bring a pillow and comforter, I think hospital ones stink. I'd

freeze to death in those things they provide! Don't forget socks/slippers and

sweats for you (great for sleeping in). Nothing like a 3am trip to the

bathroom (cause you DON'T want to wake your child and any roommates you may

have in

the middle of the night!) down the halls and/or 6am rounds to need to be

presentable yet comfortable.... Something to read is always good too, or

puzzle

books if you like them for when your child is sleeping but you are not.

If you stayed in the hospital with your child, did you stay in

there the ENTIRE time? Or if you wanted to go for a walk can you

tell the nurses and go? Just wondering about your experiences. I'm

SO NERVOUS!

I've always stayed in the hospital the whole time with during any

hospital stays. That said, I have been able to pop out of the room here and

there. How long you can do that depends on the age of your child. A baby

sleeps

a lot, so you can pop out not alarm them. Toddlers and very young children

tend to panic if you are not there if they wake up or leave them, so having

someone come and " spell " you, like a relative or even maybe a child life

volunteer if any are available... was six the last time, so I was able to

leave him in the room and let him know to hit the call bell for the nurse if he

needed anything serious, but otherwise I'd be back in x amount of time...

although anything more than five or ten minutes I did have someone come sit

with him since he was pretty immobile.

I've always done the staying, but my hubby would come during the day to

allow me time to go get a shower (for longer stays) and the grandparents would

visit, to allow my hubby and I to run down to get dinner, etc. If you are

stuck there yourself, meals can be the hardest. If your daughter is

miserable,

then she probably won't let you leave her side, so if your hospital allows

you to fill a menu card and have meals delivered to the room with your

daughters, that is a great option. Bringing snacks for yourself from home is a

good

idea too.

Don't forget the golden rule the day of surgery... As SOON as you get the

report that your daughter is smoothly under and they are starting surgery, go

straight to the cafeteria and eat a nice big meal of comforting food. Buy a

couple things you can bring back with you that will stay nice. God only knows

when you'll get another chance to eat, once they get out and into recovery

and are ouchy and cranky and out of it from the anesthesia (anesthesia

jitters), they will need your constant presence for some time for reassurance

to

settle down, and food will not be an option... After that first time of

settling down, things usually go fairly smoothly

Fingers crossed all will go well, and that the surgery will help with your

daughters issues!

Connie

Mom

to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl.

tethered spinal cord (repaired 9/00, 8/06) perineal fistula imperforate anus

(repaired 5/00, managed with daily Exlax), single kidney, PDA (closed on its

own), malformed pelvis and hemisacrum, long segment lumbosacral

levoscoliosis

with hemivertebrae (spinal fusion T11-sacrum 8/06), extra left rib, genital

anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03),

hypoplastic

left leg with clubfoot (repaired 5/01) tibial torsion and 4.5cm length

discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, DGE/gastroparesis,

mild

swallowing dysphagia, eating issues and the most beautiful smile

ever)

conni60640@...

Our website: http://members.tripod.com/conni60640-ivil/

VACTERL/VATER

support http://health.groups.yahoo.com/group/VACTERLNetwork/

TC

support group http://health.groups.yahoo.com/group/LMC-TCS/

Congenital

scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

Anorectal

malformations support - The Pull-Thru Network

http://www.pullthrunetwork.org/index.php

S. Jersey

**************Wondering what's for Dinner Tonight? Get new twists on family

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May 8, 2008

In a message dated 5/8/2008 12:37:09 P.M. Eastern Standard Time,

mindybrems@... writes:

Staying with her the whole time there was difficult bc the space is limited

and the nurses are intolerant of anything getting in the way of their caring

for your child. I was not allowed to sleep in with her, but the hospital had

a limited number of parent sleeping rooms, so ask if that's available if you

go the ICU route.

Wow, Mindy, that is SO different than at our hospital. They want us in the

rooms as much as possible, because our children are more relaxed and

cooperative when mom is there... plus they pull a cot into the ICU room for

us...

rooming in is ALWAYS allowed for us, for one parent anyway. Hugs to you, I

couldn't have stood that!

Connie

Mom

to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl.

tethered spinal cord (repaired 9/00, 8/06) perineal fistula imperforate anus

(repaired 5/00, managed with daily Exlax), single kidney, PDA (closed on its

own), malformed pelvis and hemisacrum, long segment lumbosacral

levoscoliosis

with hemivertebrae (spinal fusion T11-sacrum 8/06), extra left rib, genital

anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03),

hypoplastic

left leg with clubfoot (repaired 5/01) tibial torsion and 4.5cm length

discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, DGE/gastroparesis,

mild

swallowing dysphagia, eating issues and the most beautiful smile

ever)

conni60640@...

Our website: http://members.tripod.com/conni60640-ivil/

VACTERL/VATER

support http://health.groups.yahoo.com/group/VACTERLNetwork/

TC

support group http://health.groups.yahoo.com/group/LMC-TCS/

Congenital

scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

Anorectal

malformations support - The Pull-Thru Network

http://www.pullthrunetwork.org/index.php

S. Jersey

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

May 8, 2008

Much good luck to you! We had wonderful experiences in the hospital. The

nurses were wonderful, parents were encouraged 24/day and the gift shop and

cafeteria had most anything you might want or need. Yes, I did leave the room

for breaks and because we had great nurses, I was comfortable in doing

so..well, as comfortable as any control freak mom can be!! Of course,

was

an adolescent so whole different ball game. She was flat for two days, maybe

three and then off we went. She had a pump for pain control so was able to

spend the first day or so in la la land which was great.

Duke has such a great reputation. Prayers and hugs your way!

Randee

In a message dated 5/8/2008 12:44:26 P.M. Eastern Daylight Time,

lpizzillo@... writes:

Connie and Mindy,

Thank you both so much! That's a lot of great info!! Mindy, you

were at Duke Children's too weren't you? (If I'm remembering

correctly!) It's good to know they are so family oriented. I think

I have a lot of that (for myself) but it's good to know all the stuff

for Emma. I definetly don't have anything together for her yet.

I'll have to find some pictures of her and her sisters and the cat

for her.

The Dr. said she would *hopefully* be able to avoid the ICU, but

nothing definete.

I don't know if I updated after her last MRI. Her NSG here said the

more of the same, but the Duke Dr, said he found exactly what he was

looking for. Her cord was indeed even more far foward which means as

it grows *something* is pulling on it and it's evidence of a tethered

cord. He said yes, her MRI is techincally normal....but it's not b/c

of that. Something our NSG up here doens't " count " as being

abnormal. However, I think that is what 25 years more experience

brings to the table, KWIM? So it's nice to have a DEFINETE answer

and someone to say YES, this should help, after 2 1/2 years of " well,

maybe, I don't know, etc " .

>

> Good Luck on Tuesday--I remember the waiting for surgery days to be

almost more difficult that actually going and getting it over with!

> Here's what i learned:

> First, we were there for 7 days! The first three were really hard--

lots of pain and nausea from the anesthetic--lots of pain and nausea f

first 24 hrs after surgery. Staying with her the whole time there was

difficult bc the space is limited and the nurses are intolerant of

anything getting in the way of their caring for your child. I was not

allowed to sleep in with her, but the hospital had a limited number

of parent sleeping rooms, so ask if that's available if you go the

ICU route. Otherwise, you'll be in the waiting room with everyone

else ( and all their noisy, messy kids and an unbelievable number of

their relatives.)

> Once we were on the Neuro floor, we were in a private room (the

only option --Yea). There was a TV, vinyl couch/bed for Mom, and a

private potty. There was a sink in the room, too. Our hospital was

VERY family oriented, so the nurses supported us in being there 24/7.

I did not leave the hospital, but did use the floor shower or go for

a hallway walk when my DH or a grandparent was there to sit with her.

> Here's what you need to take:

> For you:

> *Twin size mattress pad, sheets, and pillow. I gave mine to

Goodwill after--I couldn't get the hospital smell out of them.

> *A bath towel--the ones the hospital provided were TINY!

> *Comfortable clothes, sweats, toiletries-- *Comfortable clothes, swe

they're very expensive in the gift shop

> *individual snacks for you. Our hospital gave us a badge that got

us free coffee or soft drinks in the cafeteria and the floor kitched

had a refrigerator filled with popsicles, juice and milk for the

patients/moms. There was also room for us to keep food there. they

also had cereal, crackers, peanut butter and jelly, and pudding,

along with napkins and utensils.(That was great--and at no additional

charge to us.)

> *A party box from Panera is a GREAT thing to get once you're

certain there is a refrigerator. Some friends sent us one--it had 7

huge sandwiches, chips and pickles, bagels, cookies, and fruit, along

with small cups of macaroni salad and cans of soda. That fed my

husband and I for the whole week and saved us a bunch of money in the

cafeteria, which was costly.

> * A box of gallon ziploc bags--for wet PJ's, dirty clothes, etc.

Also comes in handy for the Panera stuff if you go that route.

> *Hand lotion and chapstick--the air is VERY dry and you have to

wash your hands constantly!

> *Camera, cell phone and charger, or phone card. (We were only

allowed to have the cell turned on in the lobby--no use in ICU, or on

patient floors.) We took pictures of all the nurses Ellie liked and

of her with all her visitors.

> *Thank you notes, stamps, and address book--we received lots of

gifts before we left and lots in the hospital--I was able to get many

notes done while Ellie was sleeping.

> *Pad of paper to record questions for the Doc. They always came in

at 6AM--when I was asleep! If you write it down, you won't forget--

even if you're half awake.

> For Emma

> *Pictures of Family and Pets--we were able to put these right on

the side of her bed so that she'd be able to see everyone even if all

were not there.

> *A dry erase board or other washable marker thing. She can color

and erase--even when on her back.

> *Favorite toys and calming music, favorite book.

> *DVD's (our hospital had a video library and book carts, so we

borrowed everything.) the TV also had a bunch of kid channels and

scheduled movies--I was always able to find something Ellie wanted to

see.

> *Pajamas and robe --after the initial recovery --and Emma is

sitting up, you'll be able to go out for wheelchair walks--and her

own PJ's are more comfortable.

> *Socks and slippers--Ellie' *Socks and slippers--Ellie'

> After all that list, I'll tell you not to bring too much! LOL ! The

rooms aren't great about having any storage space, so everything is

just on the floor or under the bed. My mom and husband were able to

bring me clean clothes and rotate toys etc so we didn't have so much

clutter.

> Good luck with your preparations! At least Emma is still pretty

little and probably isn't concerned. Ellie was 8, so she know what

was going on.

> Mindy

> PS

> Make double meals this week and freeze half so there's food

ready when you get home!

>

> Hospital stay for my DD (3) and I....what to bring?

How long?

>

> Emma has her surgery next Tuesday. I'm SO nervous! Her Dr. said

> she'd be in 2-3 days after. I don't see how on earth she'd get out

> in 2 days since she has to lay flat for 48 hours so I'm figuring 3

> days at the least. How long did you or your kids have to stay in?

>

> What do we need? They told me to bring a lot of movies for her. I'm

> going to bring some books to read. Of course her favorite blanket

> and toys that she loves and normally sleeps with.

>

> But what else? Will she wear the hospital gown the whole time? Or

> when she's able to get up and go to the playrooms (they mentioned

> doing that) will she be in her own jammies? Socks for her? Do I

> need to bring snacks? (She's a picky eater)

>

> What about for myself? I'll be staying overnight and I think they

> provide sheets, but what about a blanket and pillow? I'm bringing

> toiletries, a book for me, comfy clothes, etc. What else would I

> need? If you stayed in the hospital with your child, did you stay

in

> there the ENTIRE time? Or if you wanted to go for a walk can you

> tell the nurses and go? Just wondering about your experiences. I'm

> SO NERVOUS!

>

> [Non-text portions of this message have been removed]

>

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

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May 8, 2008

Good Luck on Tuesday--I remember the waiting for surgery days to be almost more

difficult that actually going and getting it over with!

Here's what i learned:

First, we were there for 7 days! The first three were really hard--lots of pain

and nausea from the anesthetic--Ellie was in ICU the first 24 hrs after surgery.

Staying with her the whole time there was difficult bc the space is limited and

the nurses are intolerant of anything getting in the way of their caring for

your child. I was not allowed to sleep in with her, but the hospital had a

limited number of parent sleeping rooms, so ask if that's available if you go

the ICU route. Otherwise, you'll be in the waiting room with everyone else ( and

all their noisy, messy kids and an unbelievable number of their relatives.)

Once we were on the Neuro floor, we were in a private room (the only option

--Yea). There was a TV, vinyl couch/bed for Mom, and a private potty. There was

a sink in the room, too. Our hospital was VERY family oriented, so the nurses

supported us in being there 24/7. I did not leave the hospital, but did use the

floor shower or go for a hallway walk when my DH or a grandparent was there to

sit with her.

Here's what you need to take:

For you:

*Twin size mattress pad, sheets, and pillow. I gave mine to Goodwill after--I

couldn't get the hospital smell out of them.

*A bath towel--the ones the hospital provided were TINY!

*Comfortable clothes, sweats, toiletries--don't forget the tampons--they're very

expensive in the gift shop

*individual snacks for you. Our hospital gave us a badge that got us free coffee

or soft drinks in the cafeteria and the floor kitched had a refrigerator filled

with popsicles, juice and milk for the patients/moms. There was also room for us

to keep food there. they also had cereal, crackers, peanut butter and jelly, and

pudding, along with napkins and utensils.(That was great--and at no additional

charge to us.)

*A party box from Panera is a GREAT thing to get once you're certain there is a

refrigerator. Some friends sent us one--it had 7 huge sandwiches, chips and

pickles, bagels, cookies, and fruit, along with small cups of macaroni salad and

cans of soda. That fed my husband and I for the whole week and saved us a bunch

of money in the cafeteria, which was costly.

* A box of gallon ziploc bags--for wet PJ's, dirty clothes, etc. Also comes in

handy for the Panera stuff if you go that route.

*Hand lotion and chapstick--the air is VERY dry and you have to wash your hands

constantly!

*Camera, cell phone and charger, or phone card. (We were only allowed to have

the cell turned on in the lobby--no use in ICU, or on patient floors.) We took

pictures of all the nurses Ellie liked and of her with all her visitors.

*Thank you notes, stamps, and address book--we received lots of gifts before we

left and lots in the hospital--I was able to get many notes done while Ellie was

sleeping.

*Pad of paper to record questions for the Doc. They always came in at 6AM--when

I was asleep! If you write it down, you won't forget--even if you're half awake.

For Emma

*Pictures of Family and Pets--we were able to put these right on the side of her

bed so that she'd be able to see everyone even if all were not there.

*A dry erase board or other washable marker thing. She can color and

erase--even when on her back.

*Favorite toys and calming music, favorite book.

*DVD's (our hospital had a video library and book carts, so we borrowed

everything.) the TV also had a bunch of kid channels and scheduled movies--I was

always able to find something Ellie wanted to see.

*Pajamas and robe --after the initial recovery --and Emma is sitting up, you'll

be able to go out for wheelchair walks--and her own PJ's are more comfortable.

*Socks and slippers--Ellie's feet were always cold!

After all that list, I'll tell you not to bring too much! LOL ! The rooms aren't

great about having any storage space, so everything is just on the floor or

under the bed. My mom and husband were able to bring me clean clothes and rotate

toys etc so we didn't have so much clutter.

Good luck with your preparations! At least Emma is still pretty little and

probably isn't concerned. Ellie was 8, so she know what was going on.

Mindy

PS

Make double meals this week and freeze half so there's food ready when you get

home!

Hospital stay for my DD (3) and I....what to bring? How long?

Emma has her surgery next Tuesday. I'm SO nervous! Her Dr. said

she'd be in 2-3 days after. I don't see how on earth she'd get out

in 2 days since she has to lay flat for 48 hours so I'm figuring 3

days at the least. How long did you or your kids have to stay in?

What do we need? They told me to bring a lot of movies for her. I'm

going to bring some books to read. Of course her favorite blanket

and toys that she loves and normally sleeps with.

But what else? Will she wear the hospital gown the whole time? Or

when she's able to get up and go to the playrooms (they mentioned

doing that) will she be in her own jammies? Socks for her? Do I

need to bring snacks? (She's a picky eater)

What about for myself? I'll be staying overnight and I think they

provide sheets, but what about a blanket and pillow? I'm bringing

toiletries, a book for me, comfy clothes, etc. What else would I

need? If you stayed in the hospital with your child, did you stay in

there the ENTIRE time? Or if you wanted to go for a walk can you

tell the nurses and go? Just wondering about your experiences. I'm

SO NERVOUS!

May 8, 2008