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Crohn's Disease Forum » Parents of Kids with IBD » Surgery - suggestions for hospital stay?


03-29-2017, 12:36 PM   #1
cassimw
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Surgery - suggestions for hospital stay?

Hi everyone,

My 16 year old is going to have surgery in 2 weeks (illeocecectomy - not sure if I spelled that right). It's elective, because right now she is "well". We are gearing up for an anticipated 1 week stay at the hospital. We've been very fortunate not to have gone through any hospital stays with our daughter in the past. Very, very fortunate. For those of you that have had hospital stays and/or surgery, I'd be so grateful if you could give me any tips, suggestions, advice, support, etc.

Thank you all in advance.
03-29-2017, 12:54 PM   #2
cmack
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Hi cassimw,

Slip on sandals are a good idea for sure, the hospital floors and showers are always rather iffy. I brought some magazines, a good book or two and a little mp3 player with some headphones. I also brought some sweat pants, socks and a couple t-shirts along with all the usual stuff like a toothbrush/paste, hair brush and comb. It can be hard to sleep so I brought several pairs of ear plugs as well. Some hand sanitizer may be a good idea too. I always managed to forget something though.

I hope everything goes off without a hitch.


All the best,

cmack
03-29-2017, 01:45 PM   #3
If*
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Hi, if you bring slippers be sure they are non slip. Some music. Movies. Magazines. Something loose to wear home, like baggy low rise joggers and a loose tee. Cozy comfy wear. A big fluffy robe to throw over while walking with an iv, and its cozy to snuggle with too. Hair ties if you have long hair, wear it in a braid to help prevent tangles. lip balm.
Prayers for a fast recovery.
Be well, God bless.
03-29-2017, 01:55 PM   #4
ronroush7
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I agree with all of the above
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03-29-2017, 01:58 PM   #5
cassimw
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Hi cassimw,

Slip on sandals are a good idea for sure, the hospital floors and showers are always rather iffy. I brought some magazines, a good book or two and a little mp3 player with some headphones. I also brought some sweat pants, socks and a couple t-shirts along with all the usual stuff like a toothbrush/paste, hair brush and comb. It can be hard to sleep so I brought several pairs of ear plugs as well. Some hand sanitizer may be a good idea too. I always managed to forget something though.

I hope everything goes off without a hitch.


All the best,

cmack
Just added these things to my list - thanks so much! Really good idea about earplugs!
03-29-2017, 02:00 PM   #6
cassimw
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Hi, if you bring slippers be sure they are non slip. Some music. Movies. Magazines. Something loose to wear home, like baggy low rise joggers and a loose tee. Cozy comfy wear. A big fluffy robe to throw over while walking with an iv, and its cozy to snuggle with too. Hair ties if you have long hair, wear it in a braid to help prevent tangles. lip balm.
Prayers for a fast recovery.
Be well, God bless.
More good suggestions, thanks so much!
03-29-2017, 02:37 PM   #7
my little penguin
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Crocs work well
Ds was inpatient last week
Lots of socks
Chapstick
Thin (polar fleece style ) couch throw
Zip up sweatshirt jacket to cover Ivs
Favorite small flat pillow for iv arm
Laptop iPad phone and plenty of chargers
Extra blanket (bigger ) for your bed and kiddos
Sleeping mask its bright in there
Large refillable water bottles
Non pershisble snacks (bagels crackers chops)
3-4 copies of med lists and conditions on one sheet of paper

Book of pictures that makes your child smile

We took this

http://www.barnesandnoble.com/mobile...tar/1122195477

Ds loves it for the hospital stays



Find out if they have a library ( our does )
It contains lots of books and newer movie DVD
To take out as inpatient

Find out about outside space such as gardens
When the kiddo can leave the floor and how long

Crafts such as Legos or sticker sets etc...
More later
__________________
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03-29-2017, 02:57 PM   #8
cassimw
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Crocs work well
Ds was inpatient last week
Lots of socks
Chapstick
Thin (polar fleece style ) couch throw
Zip up sweatshirt jacket to cover Ivs
Favorite small flat pillow for iv arm
Laptop iPad phone and plenty of chargers
Extra blanket (bigger ) for your bed and kiddos
Sleeping mask its bright in there
Large refillable water bottles
Non pershisble snacks (bagels crackers chops)
3-4 copies of med lists and conditions on one sheet of paper

Book of pictures that makes your child smile

We took this

http://www.barnesandnoble.com/mobile...tar/1122195477

Ds loves it for the hospital stays



Find out if they have a library ( our does )
It contains lots of books and newer movie DVD
To take out as inpatient

Find out about outside space such as gardens
When the kiddo can leave the floor and how long

Crafts such as Legos or sticker sets etc...
More later
Thank you MLP! I haven't been on the forum for a few months now, but seeing you and some of the others who are active on the forum is like seeing an old, trusted friend. Don't get me wrong though, I'm sorry that any of us are here. But I can't tell you how much the support of other parents going though this means to me. I really appreciate your response. I'm making a list and you gave me some good tips. Best wishes to you and your family.
03-29-2017, 03:16 PM   #9
Maya142
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Comfy sweatpants or pajamas. My daughter wore a hospital gown (her incision did ooze a bit for a few days) but wore pajamas underneath.

Socks and slippers - they may not let her walk without shoes and slippers are more comfortable.

Anything that is distracting - we took her ipad and she watched movies. Books. Headphones - you may have a roommate. A heating pad - she got sore lying in bed so much.

Sweatshirts or a fleece - a zip up one is easier to deal with with an IV in.

The first two days after surgery were not fun. My daughter had a different abdominal surgery - a j tube placement. It was a 2.5-3 inch incision through her belly button. She also had two tiny laproscopic incisions on the side of her belly.

The first two days she was in quite a bit of pain. She was hooked up to a pain pump and once we found the right dose of Morphine, she did better. Anything that used her abdominal muscles - laughing, coughing, getting up from lying down, using the bathroom - really hurt.

She had a lot of trouble with urinating. The hospital did not put in a catheter while she was under anesthesia - they expected her to be able to pee. But, as we learned, often the bladder is "asleep" for a while after anesthesia.

Hers took a long time to wake up - which meant they put in a catheter two separate times. We weren't prepared for that but she did handle it well (though she hated it, of course).

Next time she has a surgery, we'll ask for a catheter to be put in while she's asleep, if they think she'll need it.

Don't be afraid to ask for more pain medication. My daughter was in a lot of pain the first day and was really miserable. We finally insisted the nurse get the surgeon and he changed her dose of pain medication and that REALLY helped.

Walking helps a lot. It's very hard, but try to make her walk as much as possible. We did short walks around the floor.

They won't let you go home till her gut "wakes up" - it took 4 days for us, I think. They wouldn't let her eat for a day or so - just clear liquids. She wasn't really interested in food though. Eventually they let her eat even though she hadn't had a BM or even passed gas - they hoped eating would move things along.

M was in the hospital for a total of 5 days. On the last day, she really turned the corner and got a LOT better.

When she got home, we got a rail to put on the side of her bed. Getting out of bed was very hard for her. The hospital beds have rails so she could pull herself up, but of course, her bed at home didn't have one. So we ordered one off Amazon (we had a homecare nurse who helped us choose it) and it helped A LOT. It was an excellent (and inexpensive) buy. She used it for a week or two.

We also put a chair in the bathroom and I helped her shower (once she was home). She couldn't stand long enough to do it herself.

I'll ask her and see if she remembers anything else that might have helped.

Good luck!!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
03-29-2017, 03:19 PM   #10
Maya142
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I wanted to add - M's incision was about 2.5 inches, but it will shrink when it heals. So now it's smaller and doesn't look as bad. The scar is still pretty noticeable, but she doesn't care.
03-29-2017, 03:28 PM   #11
cassimw
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I wanted to add - M's incision was about 2.5 inches, but it will shrink when it heals. So now it's smaller and doesn't look as bad. The scar is still pretty noticeable, but she doesn't care.
Thanks so much for your responses! Like I said to MLP, it's so comforting and reassuring to get advice from you guys. I would have never thought of things like heating pad, bed rail or shower seat - but all make a lot of sense! Hugs to you and your family.
03-29-2017, 03:30 PM   #12
KatieRose00
 
Join Date: Mar 2017
I had surgery a little over 6 weeks ago. Mine was emergency so I didnt have time to prepare. I distinctly remember how tough it can be. Bring a stuffed animal along. It can work as a splint for your stomach when you cough or laugh. They also comforted me. Don't hesitate to ask for pain meds. I wish I wouldn't have been so slow to ask for some. Make sure to have ear buds. I didn't have any and I really wished for them. The nurses are there to help you so don't be scared to ask for help. It's amazing how fast I recovered though. Hope things go well for her and she can also have a fast recovery. Wishing you the best!!!
03-29-2017, 03:32 PM   #13
cassimw
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I had surgery a little over 6 weeks ago. Mine was emergency so I didnt have time to prepare. I distinctly remember how tough it can be. Bring a stuffed animal along. It can work as a splint for your stomach when you cough or laugh. They also comforted me. Don't hesitate to ask for pain meds. I wish I wouldn't have been so slow to ask for some. Make sure to have ear buds. I didn't have any and I really wished for them. The nurses are there to help you so don't be scared to ask for help. It's amazing how fast I recovered though. Hope things go well for her and she can also have a fast recovery. Wishing you the best!!!
Thank you KatieRose! Very good suggestions! Sorry to hear you had an emergency situation (that's what we're hoping to avoid), but very glad to hear you had a fast recovery!
03-29-2017, 04:11 PM   #14
cmack
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Hi cassimw,

I forgot to mention that I always ask for a pain specialist before I have surgery if one is available. It makes things a lot better comfort wise. I have suffered while in the hospital at times because I wasn't getting the correct drug/dosages to control my pain. With a pain specialist I was always well looked after and comfortable. This may be an option for you.
03-29-2017, 04:43 PM   #15
Farmwife
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Hugs, I hope the surgery goes well.

All great advice given so far.
Ask if there's a child life specialist (cls) on that floor.
I know you kid is older but a good cls will be good at getting activities for any age kid.
Plus, it might be nice for your son to make a possible friend and a cls will help with that by arranging meet ups and such.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
03-29-2017, 04:50 PM   #16
TK83
 
Join Date: Nov 2016
Location: London, United Kingdom
Hi, I can only add a few other bits

What we call boiled sweets in the U.K. (Maybe hard candy) is good if you're on liquids only and can help with a dry mouth

Your own pillow, it's amazing what you get used to

Some comfy pajamas. I find hospitals get really warm especially at night and would often sleep without blankets. Pajamas can stop you flashing unexpectedly at passing nurses!

Puzzle books. Once you start feeling better, being in bed most of the day gets boring very quickly

Anything you usually have in bed at home, so stuffed toy, blanket etc. The familiarity will help you sleep better
03-29-2017, 05:34 PM   #17
my little penguin
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Realize hospital time is very different
If the nurses say 5 minutes
Plan on 30 minutes
Ask when rounds are they tend to give you a two hour window
So you know when you can leave the room
Residents show up first
Each department is different
Some show at 6 am others at 8am
But find out set your alarm
Get a shower and dress before the residents arrive
You can think straight
Sleep the rest of the time when your kid sleeps

Showers can happen with an iv
They just need to bag it
Good to do before surgery but realize most require a shower before surgery and it can't be more than 24hours

Inpatient is basically a black hole of information
So always ask the attending what the plan is
Residents don't count
Mark all questions on the white board or notebook

Meds typically are given twice a day
Some places do 8 and 8 others do 9 and9
Make sure the first night meds are orders and go over the list
Anything prn is as well so it's in the floor


Bring a checklist of night and day meds
Otherwise there may be mistakes

Things that need to be ordered from the pharmacy plan on at least an hour or more

Ask about on site laundry and where/how much
Look into guest trays
These are ordered at the same time as you would a child's meal and are much cheaper than the cafeteria plus you can stay with your child

Most have a teen lounge on one floor
Ask Which floor

Bring Lysol wipes and wet ones
03-29-2017, 05:40 PM   #18
ronroush7
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I also hope the surgery goes well.

03-29-2017, 06:33 PM   #19
pdx
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So sorry to hear that your daughter needs surgery. I really hope that it leads to a long-term remission for her.

We've had several hospital stays, and every time I was surprised by how exhausted my husband and I were after just a few days. It's hard to get good sleep in the hospital, and it's stressful and tiring trying to keep your child comfortable and making sure that everything that needs to happen, happens. For us, we found it worked best to alternate 24 hours shifts, so that we got a good night's sleep every other night, and so that we could each spend time with our younger daughter.

Hope that the surgery goes well, and that your daughter's recovery is quick.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
03-29-2017, 06:53 PM   #20
my little penguin
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Yeah that ^^^^^
We do 12 hour shifts
Dh does night duty
And I did days so I could think straight when docs were talking
03-30-2017, 09:21 AM   #21
cassimw
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Hi cassimw,

I forgot to mention that I always ask for a pain specialist before I have surgery if one is available. It makes things a lot better comfort wise. I have suffered while in the hospital at times because I wasn't getting the correct drug/dosages to control my pain. With a pain specialist I was always well looked after and comfortable. This may be an option for you.
I didn't know there was such a thing as a pain specialist. Thanks for the suggestion! I'll certainly ask about that...
03-30-2017, 09:23 AM   #22
cassimw
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Hugs, I hope the surgery goes well.

All great advice given so far.
Ask if there's a child life specialist (cls) on that floor.
I know you kid is older but a good cls will be good at getting activities for any age kid.
Plus, it might be nice for your son to make a possible friend and a cls will help with that by arranging meet ups and such.
Another old friend - good to hear from you Farmwife! Thanks so much for the suggestion - I wouldn't have thought of that :-)
03-30-2017, 09:27 AM   #23
cassimw
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Hi, I can only add a few other bits

What we call boiled sweets in the U.K. (Maybe hard candy) is good if you're on liquids only and can help with a dry mouth

Your own pillow, it's amazing what you get used to

Some comfy pajamas. I find hospitals get really warm especially at night and would often sleep without blankets. Pajamas can stop you flashing unexpectedly at passing nurses!

Puzzle books. Once you start feeling better, being in bed most of the day gets boring very quickly

Anything you usually have in bed at home, so stuffed toy, blanket etc. The familiarity will help you sleep better
I love that this forum is worldwide. I love learning new UK terminology ;-) Thanks for all of your suggestions!
03-30-2017, 09:34 AM   #24
cassimw
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Realize hospital time is very different
If the nurses say 5 minutes
Plan on 30 minutes
Ask when rounds are they tend to give you a two hour window
So you know when you can leave the room
Residents show up first
Each department is different
Some show at 6 am others at 8am
But find out set your alarm
Get a shower and dress before the residents arrive
You can think straight
Sleep the rest of the time when your kid sleeps

Showers can happen with an iv
They just need to bag it
Good to do before surgery but realize most require a shower before surgery and it can't be more than 24hours

Inpatient is basically a black hole of information
So always ask the attending what the plan is
Residents don't count
Mark all questions on the white board or notebook

Meds typically are given twice a day
Some places do 8 and 8 others do 9 and9
Make sure the first night meds are orders and go over the list
Anything prn is as well so it's in the floor


Bring a checklist of night and day meds
Otherwise there may be mistakes

Things that need to be ordered from the pharmacy plan on at least an hour or more

Ask about on site laundry and where/how much
Look into guest trays
These are ordered at the same time as you would a child's meal and are much cheaper than the cafeteria plus you can stay with your child

Most have a teen lounge on one floor
Ask Which floor

Bring Lysol wipes and wet ones
This is SUCH good information! Thank you SO much! I told my husband that I posted on this board last night and that I was taking notes on what to bring/ask/expect. He seemed puzzled, as if it was pretty self-explanatory. This is exactly the sort of stuff I would have never thought of. Thanks again MLP!
03-30-2017, 11:12 AM   #25
Maya142
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We also did a shower before surgery. It was a few days before my daughter was able to shower after surgery, so the nurses told her to shower and wash her hair the night before surgery. She was VERY glad she did.

Definitely bring her meds with you - they may not have everything she takes.

Ask the nurses what time rounds are, and like MLP said, you can then be awake and dressed for when the residents come.

The other thing that drives me crazy is "hospital time" - if she needs pain medicine or something, it's good to ask a little bit in advance, because it might take an hour for them to get it. So if her pain is increasing, ask then, don't wait till it gets awful and out of control.

Our surgeon managed my daughter's pain meds, but you could also ask for the "pain team" or pain management to come and see her. Make sure you talk to the surgeon or whoever will be managing her pain before the surgery - it's good to have a plan and know what will happen. It took some of the anxiety away for my daughter.

We were not allowed to go into the OR with my kiddo, but you can ask if it's possible. My daughter says that was the part that scared her - going to sleep and knowing she would be in pain when she woke up.

So it's worth asking about, just in case they may let you go in. In the future, we'll ask for her to be given something for anxiety before they take her back so she's not so scared.

Good luck!!
04-01-2017, 10:19 PM   #26
Faithsg
 
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We bring big fleece blankets 2-3, books, iPad, chargers, extra underwear. Don't forget stuff for yourself lots of snacks and drinks things get so expensive. My son liked Rubix cube and other hand held games, suduko and we brought high socks like basketball comfy and warmer. Good luck and speedy recovery
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