Working with my child’s medical teams

transplant key


transplant_liver_green How they treat Hannah
I just think to me the biggest thing is how they treat Hannah. Hannah is their primary person to deal with; I’m their secondary, as far as I’m concerned.

Hannah spent many months here between the complications, and just to see the fact that she still knows the nurses, she still knows the doctors…to me that says a lot, that a child who was less than two years old knows what nurse is what and what doctor is what. That’s made a real impact. I think to me that says it all, that she knows from a young age who people are.

Mother of Hannah, 4


purple-transplant multi Work with your doctors
Dad: Work with your doctors, but it’s still your child: you need to advocate for your child. I learned a lot from my wife!

Mom: There was definitely disagreements, with me being a nurse and having the medical knowledge that I had. There were some times that I was like, “But I think we should do this. I think she needs this, and can’t we give her this?” And they would be like, “Eh, we’ll watch her.” And I would just really not be comfortable with that and just kind of have to pressure them a little bit. And then it would be more like, “Okay, we’ll watch her until like 6:00, and then we’ll change things up.”

Dad: And it’s not bad to double check doctors.

Mom: And I tried not to do it in a mean way. You want to work as a team with your doctors, because they want what’s good for your child too. They’re not trying to harm them either, they’re trying to do the best that they can as well.

Dad: But everybody makes mistakes. Don’t be afraid to ask questions, I guess, and point something out – you know, don’t be mean about it, but if you feel like something maybe isn’t quite right, it’s not wrong to ask or point something out to your nurse or your doctor. I think that was the best part about being here, it really felt like it was a team, with the doctors and the nurses, for the most part. Especially the transplant team! When we come back here, it’s great to see them. You feel like you left part of your family here when you went home, because you worked so hard with them.

Parents of Sophia, 4


purple-transplant multi Communication is a huge challenge
We are constantly trying to navigate the system, even within the transplant team, having to deal with oncology, having to deal with endocrinology, having to deal with allergy or ENT’s or whoever. Communication is a huge challenge. I would say it’s a problem, but it’s not a problem that’s unique to Children’s. I am very vocal about it, but it’s not that it’s a negative about this institution, it’s just, it should be better. Especially for kids who have global diseases, who have multiple specialists. Meg at one point regularly was seeing (some of them very frequently, some of them only every once and a while) about ten specialists, and that’s been true since she was tiny. And the parents are put in a position of having to constantly be the center of the circle. And I don’t think all parents are able to do it, and I think even the ones who can do it, it’s so frustrating and so exhausting to try to communicate, because on the one hand doctors look at you and say, “But you’re just the parent,” and on the other hand, there’s nobody else who holds all the information.

Mother of Meg, 9


transplant_lung_blue A book and a camera
Get a book and camera, so you know who’s who, and write down when you talked to them last and what you talked to them about. Because I could have met every doctor in this hospital and not remember their name, or what department they’re from, or when was the last time I saw somebody. It’s the people that you see most often, like the nurses – those are the people you get to know, because they’re consistent! They’re the same nurses you see every day. It’s the doctors who change, and the residents change. You don’t get to know anybody personally and they don’t get to know you. But the only people that do get to know you are the ones that stay, the people you talk to every day.

Mother of Austin, 9


transplant_liver_green You have to pay attention
Communication is huge between the team. I asked a lot of questions. As great as everybody is around here, Walter is not the only patient here. He’s not the only person here.
Either my wife or myself is here all the time, we don’t leave. And more me, just because I’m type A – I watch everything they do, from meds to everything, ask why, question, “What are we doing?” You have to pay attention. The nurses are wonderful, the doctors are wonderful, everybody’s wonderful, but it’s about managing expectations.

Father of Walter, 11


transplant_lung_blue Don’t be afraid to say no
You just have to come up with the best organizational skills that you can come up with, and find some type of management that works for you. I once had an electronic device, and then I discovered that with this many patients, I just did better on a big calendar – you know, so that when the doctors called, I could just open the calendar to the full month, and then I can see everyone’s appointment.

And then just don’t hesitate to say, “No, that can’t work for me, I can’t be there.” Because sometimes you just can’t! And I’ve learned that if you try to be everywhere when it’s really not working for you, then you get all messed up. So just don’t be afraid to say, “No, I have another appointment,” or “I’m just way too tired to do one that day.” And they will work with you.

Mother of RJ, 12


transplant_heart_red Making sure Eva’s needs are taken care of
I’m a people pleaser, and I’m not going to be confrontational, and my husband’s the opposite, so we always say we fill each other’s gaps. So through the years I have learned to speak up, to pay more attention to what’s going on…so like, this last hospitalization, we were dealing with Infectious Diseases and we were dealing with Pulmonary and they just have a whole different approach than the Transplant Team, and I was trying to think, “All right, how do I give you what you need but make sure Eva’s needs are being taken care of as well?” So it’s hard! It’s very, very tiring.

Mother of Eva, 13


transplant_liver_green Good strong communication
The best thing to do is to make notes of your questions, ask your questions, listen carefully, trust them…but also if you have a question about even whether the course that they’re setting for your child is the best one, honestly, come to them for that too! Because I certainly had a couple of opportunities where I would come to the doctors and say, “You know, I heard about such-and-such,” or “This seems really –” whatever it was to me at the time, and I just would ask and they would just tell me. They never felt threatened by questions and actually really appreciated them. The doctors here are really confident and they really care about the patients as individuals and they take the time to learn about their patients and their patients’ families – it really does leave them open to good strong communication back and forth.

The other thing would be to just remember that everyone’s human and mistakes happen. Or sometimes we think we know the answer and then we have to realize that, “Oh my gosh, maybe this wasn’t it,” and you know, that’s just the way it is. Accept that and move forward.

Mother of David, 15


transplant_lung_blue Can I really trust you?
Mom: The only thing that we don’t like is you get used to one floor, and you get used to one ICU, and then after transplant you go to a different floor where you don’t know anybody. And now we know them, but the transition was very difficult.

Jess: It’s like, can I really trust you? I don’t know you. I know you’re specialized in this, but can I trust you with my life?

Jess, 18, and mother



transplant_lung_blue We deal best with honesty
You got to be open and honest with each other, even when you know it’s going to upset the other person. And that’s what we always told the teams. We deal best with honesty. If you try to appease us, you’re just going to make us mad. And our nurse was really good at telling us always the truth – no matter how hard it was for us to swallow, she was always open and honest with us.

Mother of Jess, 18