Pediatric surgery - advice on preparing and helping the child

June 16, 2014 12:26 PM

My 2 1/2 year old son will be having lung surgery next month and I'm looking for suggestions on how to help him cope during his inpatient stay. Also, on managing parental pre-surgery anxiety.

My son was diagnosed with a CPAM (congenital pulmonary airway malformation) while still in utero. It takes up his upper left lobe. Next month he's going in for surgery to remove that lobe via VATS (video assisted thorascopic surgery). He's expected to be in the hospital up to a week, depending on how his recovery goes. I'm hoping to hear from people who've gone through something similar with children, in terms of going in for major surgery, being in the hospital, etc. And if you've gone through this particular surgery, even better.

1) What are some ways to help a child that age through a hospital stay that is expected to last a few days? I'm thinking toys, games, and videos to help with distraction, but is there something else we can do that isn't immediately obvious?

2) I'm bracing myself for seeing him in pain. There will be pain control available to him, but there will still be some pain. Other than being there for him, in what ways can we help him through it?

3) I'm looking for ways to cope with all the anxiety I'm feeling about this. Are there any good resources out there that focus on parental anxieties pre-pediatric surgery? Maybe I'm not googling well enough but I'm trying to find something that deals with this particular scenario and not general "how to deal with anxiety" stuff (which I'm not discarding at all, but I'd also like to find resources that hone in on this in particular). If you've been through this, what helped you prepare? I know that my state of mind is crucial for him, and I want to be at my best so that he won't absorb my anxiety.

posted by DrGirlfriend to Health & Fitness (24 answers total)

Have your toured the hospital yet?

At 13 months my son has surgery for a defect of his urinary tract (yep, that's right, surgery on my baby's penis. Joy.) at Barbara Bush Children's Hospital here in Portland, Maine. The staff there was WONDERFUL in helping us (all of us) cope with the surgery, the stay, and the aftercare (including my own anxiety). I highly recommend you turn to them as your first and best resource.
posted by anastasiav at 12:49 PM on June 16, 2014 [2 favorites]

Bring his favorite teddy bear/stuffed animal/blanket so he has that familiar comfort. If your hospital is like mine, they have tv/dvd players you can bring into the room—if so, they'll have movies too, but it's a good idea to bring some favorites or something new that you know he'll like; they'll have some kind of play room, too, so as soon as he's up for it, that will be a fun thing he'll want to do.

Otherwise, yes, favorite toys are a big one. But there will be a lot of crankiness because hey, he hurts and is in a not too fun situation. Kids are so resilient when it comes to pain, I wouldn't worry too much about that; I'm sure the doctor will stay on top of the medication, but definitely do NOT be afraid to bring it up if you think he is still having a lot of pain.

Big thing for you: try to get some sleep! Go in shifts or let the nurses on staff keep an eye on him for awhile while you catch a few hours of sleep in your own bed.
posted by Eicats at 12:51 PM on June 16, 2014

So sorry you're all going through this. That said, for a 2.5 year old, this isn't that weird. I mean, everything is weird. You wouldn't be posting to ask how to prepare him for a week in a hotel, or at a relative's new house. Kids that age are regularly swooped up and taken to entirely novel places, and they're very good at adapting as long as their parents treat it as just part of life.

Yes, he'll feel pain, but yes there will be pain control. The hardest thing for little ones is expressing their pain in ways that adults can understand it, but luckily most health care providers have an entire set of tools they use to ascertain how much discomfort a child is experiencing. (They call it veterinary medicine, sort of tongue in cheek, to reflect the lack of language tools in the patient.) You can help him by supporting his efforts to communicate how he feels -- let him finish his sentences, offer him words if he feels stuck, encourage his efforts even if they leave you a bit confused. And if he seems fine, don't ask if he's fine. Just let him be fine.

Another thing you can do is to be adamant with nurses that they contact the doctor if they tell you that they can't make a change in your son's care. They do need to follow orders, and if they don't have orders, they need to call and get them. You can push for that without worrying about lessening your son's quality of care.

Finally, current research shows that healing goes better without pain, so any concept that minimizing pain control improves outcome is totally wrong. Again, you can help your son by stressing that with all providers, particularly anyone older, and insisting that if he's experiencing pain, his health benefits by controlling that pain.

Best of luck, and definitely take Eicats' advice and get plenty of sleep yourself!
posted by Capri at 12:54 PM on June 16, 2014 [4 favorites]

You might want to look at CaringBridge as a way to share updates about what is going on with family. A lot of people will probably want to know what is going on with your son and rather than field questions this is a good way to just send the message out to a lot of people at once. It's also a really great way to get support from the people that you love during a trying time. Getting support can also help minimize your anxiety. Writing things out is also a good way to get anxious feelings out of your brain.

You might also want to ask the doctor if there are any parent support groups at your hospital for parents of children who are going through surgery. Talking to other parents in similar situations might be incredibly helpful for you.

Make sure you take care of yourself as much as you can during this time. Regular sleep, exercise, eating as well as possible... take care of yourself so that you can take care of your son. Too often caregivers - particularly parents of sick children - neglect their own care which in turn makes it more difficult to be a good caregiver. I saw this with my own mom during my many hospital stays as a kid. When her friends brought her food etc, it was really, really helpful - you may want to call on your support network now and have a plan in place for your own meals during the hospital stay. Don't rely on cafeteria food if you can help it.

Have a plan for whether or not you're going to spend the night in the hospital, and if you do plan to stay the night for the duration of his stay, you should have a plan for getting home and showering and sleeping in your own real bed, even for a few hours, during the day.

I'm sorry you're going through this. Take care of yourself.
posted by sockermom at 12:55 PM on June 16, 2014 [2 favorites]

I have no personal experience with this sort of thing, but many of my classmates were interns at some of the local children's hospitals and they used to tell me about the service dogs that people would bring in for the benefit of little kids having an extended stay for one reason or another. Maybe your hospital has a similar program? I feel like having a puppy to visit after surgery would be very soothing.
posted by Hermione Granger at 1:04 PM on June 16, 2014

I dont have any specific advice, but I would bet that the hospital you're going to has a child life specialist. Usually it's someone who has a graduate level education. Their job is to answer this question. Hit them up.

And think about pracitical stuff. Is your child a picky eater? Will you need to bring special food or will he be okay eating hospital food? What about clothes? He'll likely have IV's and lines, but could still wear pants/shorts if it makes him more comfortable.

But truly, contact the hospital and ask if they have a specialist. That would be the best person to guide you.

Best wishes to you and your family.
posted by MadMadam at 1:07 PM on June 16, 2014 [2 favorites]

When our toddler was in the hospital one thing we did was let her play nurse, she had a stethoscope, bp cuff and little light and when nurses came to check her she got to check too, it made her much more compliant and less scary.
posted by julie_of_the_jungle at 1:10 PM on June 16, 2014 [3 favorites]

I had a bunch of surgeries as a very young child, most of them requiring hospital stays. If it's any consolation, he probably won't remember this at all. I don't remember any before age 5. This was waaay before iPads etc, so my parents read to me and made sure I had my blankie and favorite stuffed animal.

I think the best thing you can do is stay calm; my anxiety was always triggered by others. Meditate, pray, whatever helps you. Make sure you get enough sleep and are well fed. Take shifts with the other parent, grandparents, etc. so no one gets burned out.
posted by desjardins at 1:20 PM on June 16, 2014 [1 favorite]

Ask to talk with the pediatric Child Life Specialist before he goes in. They are pros at medical play and helping kids get ready for surgery and helping family and children cope with hospitalization.
posted by SLC Mom at 1:20 PM on June 16, 2014 [3 favorites]

A flashlight or something like that can be something fun they can do from bed. A lot of parents I know really like this turtle nightlight.
posted by dawkins_7 at 1:21 PM on June 16, 2014

Also coming in to recommend talking to the hospital's Child Life specialist team. They are experts at exactly this; explaining the process in a developmentally appropriate way, giving parents suggestions about what to do, letting the kids explore the instruments and things like that so they're not a scary unknown, and also providing lots of fun and support to distract from the less pleasant parts of being in a hospital. They are wonderful, wonderful resources.
posted by goggie at 1:36 PM on June 16, 2014

I remember as a child being very frustrated with IV's in the hand. I wanted to play games and couldn't because they were two handed the time. I'm also remember being very upset my parents didn't wake me up for the clown that gave me a teddy bear.

Give him simple tasks and things to do. I was always super tired and bored but hyped or of my mind on stimulants (which thankfully isn't the case for your son but dear god did I drive my mom crazy)

Tablets are wonderful for one handed kids applications and take up little space.
Whatever you bring make sure you can sanitize it and be aware if you're son carries it into another area. The ped. Unit I was on had a little play area when I was a kid (and by five I figured out my IV was portable and would unplug it just drag myself out there). I'm not sure if ped units do that anymore but cleaning anything he takes with him would be a good idea.

Oh is gross but the last sugury I had as an adult I got bedbugs from the hospital. So pay attention to that.
posted by AlexiaSky at 1:46 PM on June 16, 2014

An ipad is the greatest thing of all time for a kid in the hospital! My nephew was hospitalized for about a month after a car accident, and it was the soother par excellence! And based on that experience, the care and loving attention of the staff towards all of us was unbelievable. They took any mention of pain very seriously.
posted by feste at 2:15 PM on June 16, 2014 [1 favorite]

Even as a very young child I must have been a chocoholic. My mother brought fudge to me, and that and the oxygen tent are about all that I remember. The family outlook was that chocolate cures everything.
posted by Cranberry at 2:18 PM on June 16, 2014

My daughter spent the first 4.5 months of her life in a hospital and was readmitted three times in the following year, once for surgery. A baby that little is much easier to entertain than a toddler, but here are some things I would keep in mind:

Yes, talk to Child Life! They are a great resource and will help you take advantage of all that hospital has to offer. Ask for everything - pet therapy, music therapy, toys and books brought to the room, everything. If he's not up for it when it comes, you can pass, but if he is, what a great distraction.

Take a pre-surgery tour if possible, so you are coming to a familiar place to your kid when you go in for surgery.

You will probably be able to stay with your kid in his room. Do this if you can; it was a great comfort to me to be nearby. However, be prepared that you will get NO sleep, so have people who can give you breaks, and take advantage of his naps to get some sleep yourself or just get out of the room for a little while.

I use CarePages; basically the same thing as CaringBridge. It saves sending multiple emails or texts saying the same thing to different people.

Check out Mommies of Miracles on Facebook (despite the name, it is open to all parents) - I'm 100% sure they will have advice for you and you will likely find someone with your same diagnosis as well.

Be clear with your care team that pain relief is a concern. My daughter was super drugged after her surgery, which kind of sucked, but I never worried that she was in unnecessary pain. Her team knew that my goal was to make her as comfortable as possible, and they made sure that was the case.

And I would pack bubbles! Could just be my kid, but bubbles enable her to get through almost anything in the world.
posted by peanut_mcgillicuty at 2:33 PM on June 16, 2014

Think twice about letting costumed characters visit--clowns, mascots, whatever--unless you have a lot of time to prepare him. My nephew had surgery at 2 yrs old (kidney, in hospital for 10 days) and got a surprise visit from a clown. Well-meaning, of course, but... He was always an easy-going kid, but was truly freaked. (Which then really freaked out his grandfather who was "on duty" so the parents could have a short break--a domino effect of frayed nerves & tears.) For years after, he would melt down if he thought he would encounter a clown, no matter how unlikely. He doesn't remember much else about the hospital stay, but to this day (his first child was born this year), he can't abide clowns.

(I think preparation is good advice whenever a toddler/preschooler will encounter a costumed character she/he has only seen in books or movies/TV. Mickey & Minnie are giant! With enormous hands!)
posted by Nosey Mrs. Rat at 2:47 PM on June 16, 2014

I have no experience with planned hospital stays, but I've done unplanned ones with a 2.5 year old and a 7 month old (both for respiratory viruses gone seriously wrong).

If you're having this surgery done at a decently sized children's hospital, they should have a playroom. We never got to go in the hospital playrooms because we were on contagion lockdown, but they looked really nice. We saw kids riding around the halls in wagons full of pillows. There was a library of DVDs, and a reasonable assortment of books. The child life people also brought plenty of toys to our room.

The before:
As far as your own anxiety, I can't speak to the days ahead. When it's time for the surgery, have someone with you. Waiting alone is the pits. Make sure you have plenty of warm clothes - hospital waiting rooms can be cold and fear makes me frozen.

The during:
When I was staying in the hospital with my kids, I had no trouble keeping it together. Instead, I had a meltdown in the grocery store during one of my brief trips away from the hospital. (HOW CAN ALL THESE PEOPLE BE CASUALLY SHOPPING FOR GROCERIES WHEN MY BABY IS IN THE ICU AND WHERE THE HELL DO THEY KEEP THE HAM IN THIS PLACE OH WAIT THERE IS HAM IN MY CART HOWTF DID THAT GET THERE *sob*). So, don't be surprised if your brain does weird stuff when you leave the room. But I bet you'll be a rock star in front of him.

The after:
One thing that would help for you to find out is how much painful/scary/potentially traumatic stuff is likely to happen to your son while he's awake (dressing changes? mucking around with a chest tube?)

I ask because the 2.5 year old had very little done to him in the hospital, and his stay really wasn't that big of a deal. He felt bad, he played iPad and watched a ton of Thomas the Train movies, and slowly he got better. The one thing that was a real problem with him is he couldn't sleep in the hospital crib. He'd only sleep on one of us while we sat in the chair by his bed. On the last night we actually asked for him to be sedated because we just couldn't see how he was ever going to get strong enough to go home if he didn't sleep.

The 7 month old, in contrast, had deep suction (several passes of tube up the nose and down the throat; multiple nurses holding her down kicking and screaming) every two hours round the clock for a few days and now (a week later) she has baby PTSD. She gets hysterical if you put her down and I swear I can see her having flashbacks when I try to change her diaper. My next Ask may very well be about how to un-traumatize the poor kid.

You have an advantage with your son, because he should be quasi-verbal by now. You can start talking to him about the surgery a couple of weeks ahead. Play down the bad stuff a little, but be honest. Something like "A part of your lung had trouble growing. We need to go to the hospital so the doctors and nurses can help fix it. You'll ride on a big bed, and then you'll breathe some special medicine. [[I just deleted a reference to 'going to sleep' here - that might scare him.]] The doctors and nurses will work very hard on your lung. When you wake up, you might feel a little sick, and it might hurt a little. But Mommy and Daddy will be right there with you and we will give you SO MANY KISSES. You will rest at the hospital, and play with toys, and watch movies. After a few days you will be all better and we will come back home again. Then we will do [awesome celebration]."

Take some pictures before, during, and after hospital stay (especially one leaving the hospital). If your son continues to be upset after you leave the hospital, you can make the above narrative into a picture book for him, and use it to remind him: You were sick and you felt bad. But then you got better! We left the hospital. No more hospital. Bye, hospital!

Right. So that was frickin' long. But maybe bits will help. Feel free to memail me.
posted by telepanda at 3:12 PM on June 16, 2014 [6 favorites]

I'm with telepanda on taking pictures. I had some inpatient surgery when I was 5 and thanks mostly to a picture of me happily eating matzo ball soup with my favorite stuffed animal next to me and a giant bandage on my abdomen all I remember is that moment. Happy. Stuffed Seal. Soup.

And of course, a favorite stuffed animal to provide a familiar face if there isn't a parent around.
posted by MonsieurBon at 4:18 PM on June 16, 2014 [3 favorites]

Response by poster: Thanks all, lots of good things to think about. And I'm definitely touching base with Child Life!
posted by DrGirlfriend at 5:15 PM on June 16, 2014

Several short hospital stays with the toddler. Will you be in a ward or a room? We always had a ward outside of PICU, for cost, and our kid is super social so she enjoyed that, but a room would have been easier on us as parents because you have more space and privacy.

The iPad is a godsend. Any kind of screen device. Hospital wifi can be spotty, so preload lots of favourites and some apps that don't need wifi. Ours fell asleep but I noticed other pediatric kids had earphones to watch at night quietly in the wards, if that's an issue.

Figure out if it's easier for your child if you are present or absent during medical stuff. You can almost always get an over-ruling for nurses who tell you to wait outside if you're willing to do the sanitation stuff. Our kid had to have suction, and there were definitely nurses who would send us away and we figured that she was much calmer and recovered faster if I was present so we began to insist on this. This only works if you are a calm and co-operative parent during medical stuff - my husband doesn't do this because it's too tough for him.

Write down notes on proceedures, medications and questions you want to ask. A small blank notebook and pen helps hugely. There is a lot of info being dumped on you when you're frazzled, and just writing down lists can be very calming.

Skin to skin contact is super calming - lots of hugs, backrubs, etc. I used to hold my kids' feet during dental stuff because it calmed them down, just being able to see and feel my touch, and that way I was physically out of the way of the dentist. For a toddler, blankets and snuggles are great. Expect him to sleep better on you or his dad than in his bed. Ask for a bigger bed if you can co-sleep with him so you can lie down, or at least a big comfy chair to sit in while he naps on top of you.

I have a favourite meal that I only eat during hospital visits. It started as a joke but became this weirdly comforting ritual. It's a fast-food combo that I could get anywhere else, but it's become this thing that I associate now with eating on a hospital bed as a small moment of comfort and reminds me that I've been here before, and that I can do this again. It includes a drink that was a childhood favourite, way too sweet to drink normally, but it works. Find whatever that thing is that makes you feel safe and taken care of from your childhood - gummi bears, oatmeal porridge, hot chocolate - and indulge in it for the hospital trip for you. Or maybe it's music or a quiet place at the hospital.

Oh and pack clothes etc for you as well so you can get changed and brush your teeth without having to go home or send your partner home to get stuff.

If you have anxiety and you end up in any way in a PICU, do NOT make friends with other parents. Or find out anything about the other kids. Tunnel vision is necessary. It's harsh, but I still have nightmares about what happened to other kids, and I got way more stressed than I needed to, and it was pointless. I just didn't need to hear the terrible stuff on top of my own worries.
posted by viggorlijah at 6:58 PM on June 16, 2014 [2 favorites]

I don't know how verbal your child is, but it might be useful to have the ASL sign for pain (as you can see, there are some accent variations). This ASL Dictionary is comprehensive, but a little fiddly to use, if there are any other words you might want to have for the hospital. (One of my relatives has had to spend a lot of time in the hospital with her son and she found the sign for pain useful.)

And in terms of video games and toys, you could ask if the hospital is connected to Child's Play (or check the map) to see if there are games available already.
posted by Margalo Epps at 7:35 PM on June 16, 2014

If you have other children, make sure they know what's going on, at least in a vague way, and keep them updated.

Some of my earliest memories are going to the hospital to see my little brother after he had eye surgery. I don't remember anyone telling me what was happening, nor whether or not he was okay. I remember not being worried, but knowing what all that was would've probably seriously helped.
posted by Katemonkey at 5:15 AM on June 17, 2014

Couple more things that popped into mind.
1) Hospital showers universally suck, and most of them manage to flood the entire bathroom floor. Bring clean clothes and change in the hospital by all means, but do try to go home to shower. It'll help you stay human. If you forget a toothbrush the nurses can probably give you one.

2) When we were in PICU last week, they brought us a sound machine. I'd never used one before, but it was really nice for drowning out hallway noise. They didn't have sound machines in the regular floor, but they did have iPod docks. If there's decent wireless, YouTube is full of 9 hour long tracks of pink noise or ocean noise or whatever.

3) Depending on how far out the surgery is, this is how I would build up to introducing it to kid (Used a similar strategy when I was pregnant)
- Consider showing him the video "Bloodmobile" from They Might Be Giants' Here Comes Science CD. It's focused on the blood, but it's a decent brief intro to internal organs. Catchy and fun. Surprisingly age appropriate.
- Get him a doctor kit and maybe a doll (or his teddy bear would work fine if he prefers). Show him how to play doctor. This is a blood pressure cuff! It tells how strong your heart is pumping blood around your body! (And we learned about blood from the bloodmobile movie!)
- Read some books from the library about kids going to the hospital. Don't make a big deal about it, just - last week we were learning about penguins and this week we are learning about doctors. Doctors are interesting!
- Then a bit before the surgery you can be all OH BY THE WAY.... but by then he should already have some basis to understand when you tell him what's going to happen to him. That's probably easier than trying to give all the information plus all the background at once.
posted by telepanda at 7:02 AM on June 17, 2014 [1 favorite]

I had eye surgery when I was a toddler - 2, 3, and 4 years old. It was in the olden days when your parents couldn't stay with you. I remember needing to pee, and calling out for the nurse to let me out of the crib, and no one coming, and wetting my pants, and being embarrassed and miserable, and then getting told off for it in the morning. So maybe stick with diapers for now?
posted by mgrrl at 4:17 PM on June 19, 2014