The frustrating part was the nurses and the helpers, we would try to explain to them what our problem was and they had no solution. They tried to tell us, “Wear a pad, wear this, do that” – how? There’s no way to hook them up! I mean, if you took a pad and covered his belly, okay, now you’ve got to have some sort of, what, tape going around his rib cage? So it was very difficult to try to explain to them that you’re leaking when they’re not going through it and they have no other basis for comparison.
Mother of Jared, age 6
In good hands
We always like to go to make sure everything is okay, and we feel like we’re in good hands seeing a specialist. For us it’s more of a relief to know we’re going to the doctor and to touch base with them. When you’re home, you’re kind of on your own – you start thinking of all these questions. We’ll write them down and then we’ll go in with a list of questions…
With the whole ileostomy thing, that I think was definitely a challenge. We felt like there was only one ostomy specialist who really knew how to help us and what to tell us and she’s not always available. We didn’t have anyone to really talk to about our problems. And then once we did talk to her, it was like night and day! So we kind of went home in the dark, and we didn’t know who to turn to, really. We had a home nurse coming out to help us, but the ostomy wasn’t their specialty, they do everything, so that wasn’t a big help either…everyone should be able ileostomy thing, that I think was definitely a challenge. We felt like there was only one ostomy specialist who really knew how to help us and what to tell us and she’s not always available. We didn’t have anyone to really talk to about our problems. And then once we did talk to her, it was like night and day! So we kind of went home in the dark, and we didn’t know who to turn to, really. We had a home nurse coming out to help us, but the ostomy wasn’t their specialty, they do everything, so that wasn’t a big help either…everyone should be able to at least talk to the expert before they leave.
Mother of Patrick, age 2
Coordinating care
Coordinating services in one location is another important thing. When Isaiah was little, I thought it would be better to have a primary care doctor that was in my community and he would get his renal and urology services here at Children’s. Big mistake. He got sick with just a regular little baby childhood illness, and what you would typically prescribe for a child without any other health risk – this pediatrician told me to give my child Pedialyte. It sent his numbers all over the place! I end up in the emergency room and end up finding out Pedialyte is something that he cannot have. Because even though Children’s was sending the information to the doctors, something didn’t happen – there was a gap somewhere, because she’s recommending something that she shouldn’t have. And then that’s when I moved his pediatrician to Children’s, so all the services would be here. His pediatrician goes into the system, he hits all the information, it’s right there! So I think that would be the biggest thing, to make sure that the services are coordinated, because when the left hand doesn’t know what the right hand is doing, there’s always going to be trouble…
He was the first surgeon that operated. He really made this experience…he didn’t talk in those high technical terms and he really helped. Like when I go to emergency rooms or clinics and they ask me his history, they’ll say, “You really can articulate this very well!” and it’s mostly because I was helped to understand all of that. I didn’t go studying any of it, it’s just that the doctors really helped.
Mother of Isaiah, age 17
Is there really any good time?
Dad: He had an appointment in February, like a month and a half away, when his doctor said, “Okay, you have to use a catheter for the rest of your life.”
Matthew: He was furious.
Dad: I was! I couldn’t understand that. Don’t tell a kid that two days before Christmas! Let him enjoy the holidays, tell him in February!
Matthew: It doesn’t matter when you’re told, as soon as you know it’s the rest of your life.
Matthew, age 19, and father
Put it in writing
For a while when I would go into the ER and I would start telling them what was wrong, they would look at me and say, “Are you sure? Did he really have that, are you sure it wasn’t something else?” When you put it in writing and you hand it to them they don’t question you. It was amazing! Because he had his gallbladder out, and they said to me, “Are you really sure he had a gallbladder out?” I said, “No, really, I spent Christmas in the hospital. Three weeks in the hospital for that one, thank you!”
But I just found that once I put it in writing and handed it to them, so many people were thankful and they would say, “Okay, can we make copies?” And I would make copies and give them copies when I got there and say, “Here, this is yours.” And it made such a difference with being able to talk to them, because now they have what they need and the rest of it can be questions that you have and they can look at what they need to do, and they can have more discussions versus questions and answers, going down system to system…
I just do an update list every time we go to the doctor, so I just keep track of what’s going on. He had recurrent line infections for a long time, so I would have the actual dates of infection and the medications that they used and the germs that were growing, and they used that. But now that we’re not having so many infections – it’s more just systems that are affected, so I just do a list. I start at the top and I do neurology: this is what’s going on. I do eyes: this is what’s going on (because he has only vision in one eye and he’s had a lot of problems in the other). And then I do hearing: normal, last exam was… I go every system down and I just list them all, and I do a list of his meds, and then I hand it to them. And if I have questions then I just either write them down or sometimes ask off the top of my head. But here’s what I’ve got. And when you go in and say, “This is what I’ve got,” they look at it and then they can say, “Okay, what about this, what did you do for this problem?” So it kind of opens up communication if they have those questions.
Mother of Robert, age 16
I was very anxious and felt I had a million questions but couldn’t come up with them at the doctor’s office. My recommendation is to always write down your questions or concerns beforehand. I know many people say this but I never listened, and if I had I would have had a better experience. I actually contacted my pediatrician after the first visit with the specialist because I felt so “in the dark” regarding the prognosis. She contacted the urologist who contacted me and was excellent in answering my questions. But if I were more prepared going in, I would have had less stress.
Mother of Kristin, age 4
Having that support
The nurse was very, very good. We could email her – when Alexa had the issue with having a little blood on the tips of the catheter, I emailed her and she called me at work, and we discussed Alexa and how she was doing mentally and physically. So just having that support, and me being in the nursing background, I can talk to somebody from that and they understand where I’m coming from as a nurse and as a mother.
Mother of Alexa, age 16
Even the best doctor will miss details
I think that the most important thing you can do is read as much as you possibly can about your kid’s disease and know your kid’s history really well, because even the best doctor has 10,000 kids in their practice and so sometimes they’ll not think of a detail, and you bring it up and you get better care for your kids. You can’t expect your doctor to keep 10,000 kids straight in their head. It’s not possible, and so it’s incumbent on you as a parent to say, “Well, what about this? Is this coming up? Are we going to do this?” and then get a why or a why not from your doctor…
I think sometimes clinicians expect parents and kids to be passive followers and to just do what they’re told by their doctor. And in general I tend to agree that people should do what they’re told by their doctor, but some doctors resist the negotiation phase, where you’re in the office and you’re like, “Well, do we have to do that, or can we do this?” And I have never had that problem at Boston Children’s, but I’ve had some places where it’s like, “Well, no, I’m deciding what the treatment plan is, I’m the doctor!” And that doesn’t get the results you want.
Father of Siobhan, age 9
You know your child
In terms of dealing with the doctors, I would just say: as a parent you know your child, so if you think there’s something wrong, you need to kind of push until you can get someone to acknowledge that and take a look into it for you.
Mother of Siobhan, age 9
Mother of Ryan, age 11
Having that open-mindedness
At Children’s the nurses are a little more open-minded to what the parents are saying. They don’t come up with a quick conclusion – they listen to what the parent’s suggestions or thoughts are as to what’s going on. The comments I would get a lot were, “You’re with him every day, you know what’s going on with him, you know how to read his symptoms, and you have a pretty good understanding of what’s happening.” And getting that higher level of respect from the nurses helps, in that you’re not just the mother: you’ve spent enough time dealing with these issues that you do have an understanding and you have learned some things. Some nurses and doctors that I’ve dealt with are just like, “Nope, this is what it is. It’s cut and dry, this is exactly what it is.” It’s like, “Well, are you sure? Could there be other possibilities?” And not everything is the same situation for everyone, there’s little variables, little differences, and just having that open-mindedness that there are differences in how kids deal with things, handle things, interpret things…
Mother of Ethan, age 13
Advice for doctors
I would just say, acknowledge the fact that it’s kind of an overwhelming thing, which I think they do, and really let families know it will be better. And I think they’re right to encourage us really to push kids to be independent, because they really need to do it. You’d think, “Seven years old, they’re cathing themselves? Come on!” but you know what, you got to push them to do it themselves! Because the sense is that they’re too little to do that themselves, but really the sooner you get them independent, then it becomes a fact of their life and it’s part of their morning routine. And I just think it’s a lot better for them to leave your side, and it makes them feel more normal and less dependent on you, which is of course the goal.
Mother of Kayla, age 14
They talk to him straight
I haven’t found it stressful. I just think the doctors at Children’s are so great, because they really keep well-informed, and when we need them they’re always there, always. I also think that having a good relationship with the nurses is absolutely key. Our nurse has been absolutely phenomenal. We have a direct line, we communicate with her probably more than the doctor because she knows Dylan so well. I can call her direct line and she calls me right back – it’s fantastic. So I would definitely say make a good connection with the nurses because they are wonderful.
It’s just been so great. It was almost by luck that he was brought to Children’s instead of another hospital the morning we brought him into the Emergency Room, and every single doctor has just communicated so well with us and with Dylan. That’s what I love too, because Dylan was only 11 when he got diagnosed and they talked to him straight. They don’t talk down to him like he is a little kid or wouldn’t understand it, they talk right to him. I love that.
Mother of Dylan, age 16