Importance of honesty
I think it’s important to be open and honest with their children no matter what the age is – being developmentally appropriate, but letting them know what’s going to happen and what they’re going to feel and what they’re going to hear and what they’re going to see and experience. If they know what the environment is going to be like, they can prepare and process it.
A lot of kids are just very anxious for things that they don’t know, so it helps if they’re well-prepared for what’s going to happen to them. They’re going to know what to expect, and maybe they’ll understand that getting an IV is going to help make it so they don’t have to have as many blood draws and that they can get their medication more quickly. Just giving them the ability to process what is going to happen to them, really, it makes all the difference in the world for our patients and their families.
I really want to emphasize the word “process”. This is a process. There are going to be good days and there are going to be not-so-good days, and it’s okay to celebrate those good days, and it’s okay to call in some extra support when you need it for the bad ones – whether it’s Melisa and me, or other members of the team, or your community, or just setting up some time just for yourselves.
Also, sometimes it seems like there’s so much focus on the details, and what I hear from the patients is that they’re not just “that organ”. Sometimes they feel like they get lost in that, and we work very hard on focusing on the bigger picture, seeing them for everything else they have going on in their life as well. I think that’s really important, that they continue to have their identity as a person and as a family member and in all the roles they have in their life, not just as a patient, but as a brother or a sister or a friend.
Kristine McKenna, PhD, Transplant Psychologist
Connecting members of the transplant community
It’s a really tough thing for us, because we have to be careful with confidentiality, but one great way to connect is our Facebook page. We now have a pretty extensive Pediatric Transplant Center Facebook page, and that’s a way that a lot of the families can share information.
We also do Patient Family Day every year. It’s for all our transplant recipients and their families. It’s usually in the fall, and currently we host it at Kimball Farms: we rent it out, and they get to go do bumper boats and miniature golf and batting cages, and we have food and everything, and it’s a great way for the families to connect. We also do some education there, so Child Life puts together some information on medication and taking care of yourself. We have about 300 people come to that every year, so that’s a great way for the families to connect and be involved with each other.
John Kueven, MSHA, MBA, RN, Administrator of the PTC
Talking to friends
I think a lot of times kids – especially the teenagers – have a hard time trying to explain to their friends what’s going on. They might feel that their friends are withdrawn and don’t want to talk to them anymore. It seems that their friends are really just nervous and don’t know what to say or what to ask.
A Child Life specialist can talk with patients and help think about ways to tell their friends what they’ve been through and why they can’t do certain things, or eat certain things, play certain sports, things like that. We also can have the friends come in if that’s something that the families agree to, and help facilitate conversations.
Kate Huyler, CCLS, Child Life Specialist, Cardiac Intensive Care Unit
For many people, they feel better than they’ve felt for a very long time. For some of our older kids they’re able to do things they haven’t been able to do. We have kids that have learned to ride a bike for the first time, because when they were younger they didn’t have the lung power to do it – or kids that have been home schooled because they were so sick who are able to get back into the classroom. Generally they feel better and are able to move on with their lives.
They will have to take medications for the rest of their lives and will have to come to clinic and may need admissions so it is not something that you can ever ignore or forget about. They need to take their medication at the same time every day and take their blood pressure, weight, and do spirometry (a home pulmonary function test). For some of our patients, the treatments they were doing before transplant were much more difficult and time consuming then what they need to do after transplant. That is always our hope but some children have a harder time after transplant and may continue to need a lot of care and admissions.
Lynne Helfand, MSW, LICSW, MPH, Social Worker, Lung Transplant Program