How do I manage a long stay in the hospital with a toddler?

March 20, 2011 5:44 PM

Help us make our (at this time indefinite) stay in the hospital with our 18 month old son more pleasant, homelike, less exhausting.

Our little guy was hospitalized Thursday for an as-yet-undiagnosed illness involving vomiting, diarrhea, fever, and major lethargy. They initially thought it was all caused by a virus, and planned to just keep him hydrated via IV until he'd bounced back. He isn't bouncing back as fast as anyone had hoped, and they have found signs of infection in his blood and stool. Meanwhile, we wait, and try to manage things at the hospital and the rest of our lives, around this big unknown.

Obviously, you out there in MF land can't fix the HUGE issue here, which is "Get my boy better!'. What I'm hoping you can do, however, is offer me your tips and tricks for surviving long hospital stays. How did you make the room more comfortable? How did you manage food without going broke eating at the hospital? Anything else you can suggest? What did you bring that made you feel more human?

Some other things that might be helpful: the hospital is brand new and very nice (the restaurant is good and not expensive, there are play areas for older children and a beautiful riverside walking trail outside, there is a fairly comfortable windowseat/bed in the room, there is a fridge and microwave for patients' use.

We have a 5 year old, and are currently having her at the hospital with us part of the day, and home for a nap, and then again at night. She will probably be spending the night with our fabulous daycare provider tomorrow. She's handling it well so far, but obviously it's not a great place for her to hang out all day. OUr daycare is an hour away, in the town where I work, so that's not a daily option. We have lots of fabulous friends in the area, but no family currently available to help.

We are not worried about the medical expense: we are fortunate enough to be double-covered with very good insurance. I am a little worried about other expenses, both meals at the hospital, and hotel expenses if we (potentially) get sent up to Portland, Oregon's more specialized hospital. We also both have good amounts of sick leave, though both are feeling some anxiety about work being left undone.

Currently, our routine is to have one of us (most often me) spend the night, then the other one join in the morning, hang out all together all day, take sister home for a nap and a shower for the parent who has been at the hospital, then return and relieve the other parent. Leaving our boy alone at the hospital isn't an option for any time at all-he is hysterical at the presence of hospital staff, even when we're there.

I know this is garbled, but I'm tired and anxious....thanks for bearing with me!

posted by purenitrous to Grab Bag (20 answers total)

Wireless internet can help you stay sane while there. Some places may not have it though.

You can make the room more comfortable by bringing stuff in from home. My dad just spent several weeks in the hospital, and we had family pictures, plants, extra pillows, plus his laptop there.

Food - we handled that by eating at the restaurants near the hospital. If that isn't feasible based on your hospital's location, I don't see any reason why you can't brown bag a lunch or three.
posted by AMSBoethius at 5:51 PM on March 20, 2011

Ipad will provide videos, games, puzzles.
posted by k8t at 5:59 PM on March 20, 2011 [1 favorite]

Bring bright blankets, warm socks, favorite pillows. Load up on reading material, puzzles and such. Dress in layers (hospitals are cold!). A lunch bag with sandwiches, hard boiled eggs, hummus, cheese, fruit, etc. can be refilled each morning and will cut down on cafeteria expenses. I hope your baby is well very soon and home before you have time to try these suggestions.
posted by Allee Katze at 6:07 PM on March 20, 2011

See if you can bring your own bedding, or at least pillowcase. I had a set of Where's Waldo sheets when I was little that I absolutely adored. I still have the pillowcase, with Waldo's big, dopey face right smack in the middle of it. It adorns my pillow all the time--who cares if it doesn't match the rest of my decor. It makes me happy.

See if you can find some awesome sheets with dinosaurs or robots or TIE fighters, and make the room a little more friendly.

I hope that tinynitrous gets better soon.
posted by phunniemee at 6:13 PM on March 20, 2011

hotel expenses if we (potentially) get sent up to Portland, Oregon's more specialized hospital.

If this happens, please talk to a hospital social worker or patient liason at your current hospital. Somebody there should be able to either tell you your options for staying in provided-for housing or in putting you in touch with people at the other hospital who can tell you your options. (Ronald McDonald House, on-site lodging, hospitals nearby that offer discounts in circumstances like this). You may not need to pay or pay as much as you think.

As for everything else, for your son, bring in something from home that is familiar. I'm not sure if he would be allowed his favorite stuffed animal or blanket in his condition, but maybe there's a painting or a picture that you could bring in?

For yourselves, any type of travel pillow so you can nap in any type of chair. Your favorite mindless reading --- a cheesy novel, trashy magazines, etc. I'd also check out the nearest grocery store to the hospital. If they have a soup and a salad bar, it'll almost certainly be cheaper than the hospital. And if not, you can buy a baguette, cheese, fruit, drinks, and anything else there. You probably want grab and go type of things, and our usual go-tos include those items.

For your older daughter, see if you can scrounge up some kid's magazines like Hilights or National Geographic kids. Lots of crayons and coloring paper/books. If you have an Ipod, load it with children's music so she can listen to it. And if you can at all, try to have someone take her overnight or for a day or two and here and there, both for her and for you. I know this may be difficult to arrange, but I know I'd do it for a friend in a similar situation in a heartbeat if I were asked.
posted by zizzle at 6:15 PM on March 20, 2011 [2 favorites]

Please lean on some of your friends to bring you meals & snacks so you don't have to pay at restaurants or the hospita -- I bet they are more than willing to assist.
posted by BlahLaLa at 6:17 PM on March 20, 2011 [8 favorites]

Make time for your 5 year old to be the center of the world. I know you must be totally scared and focused on the little one, but this is going to be a very confusing and difficult time for your older child. Is suggest you make sure to make time to be with HER and not to have it feel like you're just fitting her in between waiting for the doctor, etc.

Are you able to bring your little one some toys or blankets or things from home? Those can help him sustain himself for bits of time away from you all.

In terms of the expenses and such, look for residential, extended stay type hotels that have equipped kitchens. You can then shop at grocery stores and cook on your own.
posted by jasper411 at 6:20 PM on March 20, 2011 [2 favorites]

Zizzle is right on re food and lodging expenses- contact a social worker at the hospital. I hope your baby gets well soon!!
posted by PorcineWithMe at 6:21 PM on March 20, 2011

First: really sorry to hear about your little guy's illness. I hope it all goes away quickly and with no long-lasting effect.

When my first child was a newborn she was hospitalized for a few days due to (what turned out to be, thankfully) jaundice and dehydration. I lived at the hospital for several days. The hospital staff ordered meals for the patient which were, of course, actually for me--so maybe you can arrange something like that?

By all means call on your friends during this time. Have them hang with your 5 year old, cook you dinner or invite you over, whatever. I am sure people around you will be happy to rally for you during this tough time. Put out an APB, or appoint the most networky of your friends to do it for you, and let them catch you when you need to fall.

Hang in there--we're rooting for you.
posted by Sublimity at 6:25 PM on March 20, 2011 [2 favorites]

Depending on your budget and views on tv, a portable dvd player w/ headphones can be great for giving people some quiet personal space. It would be useful if the 5 yo has favorite dvds. We have Sony dvp-fx930, got it at the local Radio Shack a while back. But there are others.
posted by carter at 6:31 PM on March 20, 2011

btw if you want to post the hospital location maybe local Mefites (I'm not in Pacific NW) can contribute suggestions for local healthy take-out places, etc.
posted by carter at 6:41 PM on March 20, 2011

Check to see if there's a Ronald McDonald house available. That could give you a much closer place than home to shower, rest, hang out with the 5-year-old, and decompress. They also have kitchens available so you can fix yourself some real food. It was a God-send for my family when my little brother was hospitalized many years ago. We were still at the hospital most of the time and barely used our room, but just having a comfortable place with real beds and a full-sized bathroom made a huge difference to our state of mind. If there's no Ronald McDonald House, the hospital staff can probably point you to something similar.
posted by Dojie at 6:46 PM on March 20, 2011

Our twins were born five weeks early and spent 13 days in the NICU. (The babies weren't seriously ill, just early, and we lived close enough that we never spent the night there. So I don't have much beyond the Ronald McDonald house suggestion. Though some folks bought us lunch in the cafeteria just because they saw our NICU wristbands.) I just wanted to say I'll be thinking about you and your family and sending good thoughts. It is scary as shit having your child hospitalized.
posted by killy willy at 7:46 PM on March 20, 2011

I'm sorry your little one is in the hospital, and I hope he makes a speedy recovery. My only suggestion if his stay does end up being lengthy is to set up a Caring Bridge website - it's a free blog site that makes it really easy to share information with friends and family. It can help cut down on sending out updates, and also I imagine that writing journal updates can be therapeutic. You can decide how private or public to make it.
posted by radioamy at 8:36 PM on March 20, 2011

If you can't get into the Ronald McDonald house, you might look into VRBO or AirBnB for lodging. both are likely to be less expensive and more homey than a hotel.
posted by juliapangolin at 9:01 PM on March 20, 2011 [1 favorite]

Response by poster: Thank you all for the helpful suggestions. I'm a social worker myself, but am ashamed to admit I'd completely forgotten the whole "talk to the hospital social worker/Ronald McDonald House" option...thanks for that.

We have iPhones, with Netflix loaded for instant viewing, free wifi, and a friend's borrowed portable DVD player. I just made arrangements for my 5 year old to spend the night at her beloved daycare provider's house tonight, which makes everyone happy :).

I appreciate the reminder to let people do stuff for us. Everyone offers, but it sometimes is hard to say yes, or to think of specifics. We did have a friend bring us a glorious quiche tonight, and another friend took our 5 year old and played Wii with her for hours. The reminder to give her as much individual attention as possible is very appreciated.

We're only ten or fifteen minutes away from home, but will definitely pursue the Ronald McDonald house option if we get sent to PDX.

Also appreciate teh Caring Bridge suggestion; it's exhausting to have the same conversation with ten different people every day, update facebook, and send out a bunch of emails.
posted by purenitrous at 9:53 PM on March 20, 2011 [1 favorite]

Best answer: I spent more than my fair share of time as a hospital patient when I was a little kid, on a number of occasions. I've also spent long times in the hospital visiting ill relatives. My advice:

1. The biggest thing that made me feel secure was having my parents around. The stuffed animals and stuff were nice, but knowing my parents were always there was far and away the most important thing. You're already taking care of that, so, good! But don't feel like you need to bury him with toys and blankets and stuff.

2. Go for walks. As long as one parent is with him all the time, don't feel like every minute you spend at the hospital needs to be spent in his room. You'll go stir-crazy pretty quick that way. One parent can take his sister out to explore the hospital -- sometimes hospital campuses have cool stuff in them. You might find a neat fountain, or a window where you can watch the helicopters take off and land. And just being able to see the different parts of the building and find your way around will make you feel less claustrophobic and out-of-place.

2.a. Don't forget that if your son is awake for any substantial part of the day, he may start to get cabin fever after a while, too. If the doctor clears it, take him for a short walk up and down the hall, so he can see what the ward looks like, where the kitchen and playroom are (even if he can't go in), and so he can see and maybe interact with the other kids there. I was a desperately shy child, but I loved getting new visitors when I was in the hospital; it was fun, and it made the hospital seem a lot less scary.

3. If you're not doing this already, keep a notebook where you write down stuff his doctors tell you, as well as the names of his doctors and nurses, the nursing shift schedule, doctors' contact information, etc. Don't be shy about asking questions, and ask about reliable resources for more information on his illness.

4. Take deep breaths. When I was about your son's age, I had to go into the hospital for what turned out to be a bad reaction to an antibiotic. No one knew that's what it was, of course: all anyone knew was that I was feverish, bright pink, and swelling up like a puffer fish. I had two more lengthy hospital stays before I hit second grade. And you know what? I am A-OK. Modern medicine is wonderful. Without it, I would be dead about six times over. It's scary, I know, but they will take good care of your son.
posted by Commander Rachek at 11:38 PM on March 20, 2011

I spent a lot of time in hospitals the past 3 years with a friend. Hopefully your hospital is keeping you better informed, but one here had a program I didn't even know about at first: Dining in-room with the patient. It was only $6.50 a meal (bought the vouchers in either the gift shop or cafeteria), flat rate, and I could order anything off the menu. It was A LOT cheaper than eating in the cafeteria. Obviously there's limited room so really only one person can eat in-room at a time. (An alternative - here each floor has a small solarium, so if it was empty we could eat in there.) One day I ordered and didn't get anything off the dessert menu, and the cafeteria worker actually told me "come on, order something for later. It's basically all-you-can-eat and you might be hungry later on." I know $6.50 is expensive on the long term, but buying things in the cafeteria would up being more like $10-12.

The thing that made me feel a whole lot more comfortable was house slippers (shoe-style slippers). I hate having shoes on all day long. Of course I put on my real shoes whenever I left her room.
posted by IndigoRain at 11:47 PM on March 20, 2011

Regarding food: have one of your friends organize a meal train for you (that's what people here call it). That friend will be your point person and will send the word out that you all need food, and will give everyone days/times to sign up to bring something or have something sent over.

Also, is your daughter in school? Many schools have a "families in need" service where they'll offer to share bringing meals and running errands for you. Use it if you have it (but make sure your friend meals person and your school meals person get in contact with each other). I know it feels weird to have strangers helping you out, but people really do want to help when you have a kid in the hospital. The best way to thank them for this is to offer to help the next family who needs it.
posted by cooker girl at 6:34 AM on March 21, 2011

Caring Bridge will, indeed, save you having to tell and re-tell your story.

Can you call your local librarrian and ask them to pull you a piile of books & DVDs for your lad? It would bring some variety to his entertainment *and* save you some time: when I took my son to the ER twice in a weekend, we watched the Scooby Doo witch movie four or five times ina row. Plus all the DVD extras. And it may have been more painful than his broken arm.

A few people I know have meal lists at their church. This is amazing to me because it offers the comfort and decent nutrition of home-cooked foods without you having to shop & cook. (I am proud that my wife always delivers a meal to new parents and new home-oeners for this very reason.) And if you can get some of his favorite comfort foods in there instead of hospital food, it might make him happier.

Make sure that two if you are there whenever the doctor speaks: one to engage and one to take notes.

Good luck to all four of you!
posted by wenestvedt at 9:48 AM on March 21, 2011