How do you help families get through long hospital stays?
Every family is different, and that’s one of the things we try to assess pre-transplant: what are their coping skills? I think we try and help them remember. Some parents like to work out, and they can go to the gym across the street for free if that helps during the long admissions. Some like to read, some like to knit, some like to quilt, some like to spend time on the computer updating their Care Pages* or their blog or whatever. All that being said, no amount of coping skills can prepare you for a three-month hospitalization. Everything that worked, eventually you’re going to get sick of. We offer suggestions and we try to be helpful, but I totally recognize at some point that I’m sure the parent in their head is saying, “Just stop. You’re too happy. You’re too perky. Stop offering me suggestions.” And I recognize that. But we just try to give them things to keep them busy, give them things to hope for. I think Child Life and the volunteers really help with that, they have activities in the hospital.

And we encourage parents to leave the hospital and go do things, especially if they have other kids – to spend time with their other family members. As weird as it is, we encourage them to leave the hospital; sometimes you just need to recharge your battery. You’re not a bad parent if you leave the child in the hospital overnight. We have volunteers, we have people watching after them, they’re in good hands, and sometimes that’s what you need.

Emily Holman, MSW, LICSW, Social Worker, Multivisceral Transplant Program

 

Play is the universal language as far as getting kids to open up and express what they’re going through. It can be something as simple as pretend play with a kitchen set to more directed medical play, where they’re really able to express what’s happening to them using their toys – whether they’re angry about it or they’re showing how they want to be treated by the medical team. They can play that out, like a role reversal.

We do a lot of art activities. A lot of kids like to express themselves through art, so they’ll draw pictures – really you can kind of just provide the materials and they’ll just go with it. They have great imaginations, and if they’re having a hard time with something specific, like being away from home or being away from their friends or waiting for a heart transplant, it might come out in their artwork or play. We work on providing kids and patients with opportunities throughout their daily routine to be able to process what’s going on through play.

We also work on keeping routines as normal as possible, trying to help kids have sort of a normal life in the hospital. We make sure they have play time, that they are receiving their therapies, that tutoring is set up, that the kids are getting out to the garden or down to the lobby if they can, so they’re not in their room all day long.

Kate Huyler, CCLS, Child Life Specialist, Cardiac Intensive Care Unit

 

One of the simplest things families can do is prepare as best as possible, not just preparing their children or teens, but themselves as well. That may involve bringing comfort items from home –a favorite blanket or stuffed animal, a computer, music – anything to help the children or teens feel a sense of home here with them. Parents can be better prepared by enlisting help from family and friends when they need it. Taking breaks during hospitalizations is also important whether it’s going to get a cup of coffee, taking a shower, taking a walk in the garden, going to the gym across the street (which parents can go to for free), or going home to spend time with other family. Breaks are paramount to the physical and psychological health of the patients and their families…
It’s also about connecting and knowing what resources are out there. If you feel like your child doesn’t understand what’s going on or needs some normal therapeutic play, you can speak with the Child Life specialist or the nurse. If they don’t understand exactly which medications are which, you can talk to the pharmacist or nurse, or if they really are having a hard time and you think your child is depressed, you can talk to the psychologist, the social worker, or the Child Life specialist. There are so many resources available that families can utilize if they ask.

Kirsten Getchell, MS, CCLS, Child Life Specialist, 10 South

 
How do families prepare for life after transplant?
Ahead of time we know that they’re going to be out of school for a certain amount of time, so we get tutoring in as soon as we can so the tutoring will be in place and they won’t be as far behind when they do get back into school. We’ll talk with age-appropriate language about the medications they’re going to be on after and the follow-up schedule after, so they’re mentally prepared, and then the parents are actually physically preparing in regards to getting schedules at work arranged, other daycare providers arranged, and so on. We’re really just educating them on what the needs are after.

Heather Bastardi, MSN, RN, PNP, Transplant Coordinator, Heart Transplant Program

 

We talk about the immediate time after transplant in terms of where they’ll wake up in the hospital, what kinds of IV lines they might have on their body, and what machines might be around them. They get a chance to see the ICU, which is where they wake up after transplant. Then, eventually they’ll go to the Transplant Unit, which is the floor where most transplant patients go, and they get a chance to see that floor as well. So we talk about the immediate period and what it might be like, what they might see and hear and experience. Some kids want a lot of information and some don’t want to hear too much.

Then going forward, we talk about learning a whole new way of taking care of themselves and how that might be different from what they’ve done before. The child and their parents will be taught while they’re in the hospital, so by the time they go home, they should be comfortable with their new care regime.

We talk about the months after transplant when they won’t be going back to school, and how they’re going to manage that, remind them that friends can still come and visit. We talk about what the restrictions are, like being careful about being exposed to anybody with any kind of cold or infection.

This can be overwhelming, so we try to think about what their actual questions are and how far ahead they want to talk about and how much information is useful to the child. We try to gauge what it is that they need to know at that point, what they’re really wondering about and worrying about. It often surprises me!

Lynne Helfand, MSW, LICSW, MPH, Social Worker, Lung Transplant Program