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 We call it the pee pee doctor. Manny’s sort of embarrassed about going to Urology, so when we were in the waiting room, I said, “Everyone here has a pee problem.” And then he got it! That’s a good way to look at it.

 

Mother of Manny, age 10

 

Rule number 1
We have certain rules that we’ve got around appointments because our lives were nothing but doctor’s appointments. Rule number one: no doctor’s appointments on Wednesdays, unless the doctor literally only sees patients on Wednesday. Wednesday is our day off. The subspecialists – we have it now scheduled, we have two weeks a couple times a year where we live at Children’s and we just get them done, just get them out of the way, so that we don’t have to go back…
Living at Children’s is not my idea of a good time, never mind hers! But we’re pretty good. We’ll do clapping games and we will do books, we will do coloring, she’ll draw –we have a notebook where she’ll draw pictures when we go. Usually when we go we look like we’re moving in! The hand clapping games, though, that’s been our big one. Actually, we’re rather proud of the fact that we think we’re pretty good.

Mother of Amalia, age 9

 

I try to work around it
At least once a week, I’ll sit down and I’ll say to him, “Okay, here are the appointments for this week.” And it’s hard because right now we’re in one of those appointment zones. We have to go to Boston tomorrow for one medical center, and then next week he’ll go and have dental work under anesthesia at the local hospital on Tuesday, and Wednesday we go back to that hospital for Cardiology and Endocrine. Then I say, “Oh, look at that! We have a couple weeks off.” So he kind of gets discouraged, but the agreement we have now is that when school is in session he doesn’t want to miss school, so I try to work around it as much as I can. Local appointments I try to get late in the afternoon, and when I can, I try to not do Fridays because Fridays are usually a fun day at school – they do some kind of fun activity. So I try to work around what his activities are…

My husband would come back and forth. He would come down when he could, and his sister lived about ten minutes out, so sometimes he would just crash there overnight. Or he would go back and forth – he used to go to work and sometimes come down – and sometimes it would be days before we would see him, because he still had our other child at home that we still had to take care of and get him off to school and activities and try to make all that work. So he was on the road a lot.

Mother of Robert, age 16

 

How much do you want to interfere in her life?
Okay, how much do you want to interfere in her life? I know she says she wants to have that life, the school life – “I have too many doctor’s appointments!” and stuff like this. It interferes with her life, and I say, “I know, but you want to feel better!” And I unfortunately have fallen down and given in to her sometimes, “Okay, okay,” and I shouldn’t have.

Mother of Elizabeth, age 16

 

We didn’t have time for shock
We really didn’t have time for shock because we didn’t know what it was. And because of my medical condition, I think my husband felt it the most, so the smoking didn’t stop. Eating habits were terrible because you’re at the hospital all the time… the only thing I can say is thank God for family. And my husband’s job was very understanding, he was out of work a ton…
I would probably say bring another person just for support. With the appendo-vesicostomy, we heard that we could stay there up to two weeks. Nobody could come with us for that long, especially watching our daughter back here as well and work issues and whatnot. But if we had somebody with us, that probably would have been the ideal situation, so when the doctors were talking to me, Vic could’ve been there at the same time instead of taking care of Jared, and I would have had some backing.

Mother of Jared, age 6

 

 I went to my mother-in-law’s at night to sleep and came up during the day…I wasn’t too stressed because I had my mother-in-law. I’m sure if you asked me closer to that time, I would’ve been like, “Oh my gosh!” But I was lucky the way it worked out, that my mother-in-law was available every day for my daughter…It was stressful a little bit, because I had never left her with anyone, and I always kind of thought no one could do as good as job as I could! But she was fine and she had fun, and she came up here almost every day.

 

Mother of Eric, age 8

 

Trying to get some normalcy
We did lots of hospitalizations and it was just really hard. My husband stayed home. I wouldn’t leave the hospital, so that meant the other child had to get shuffled around. He was four years older, which made it hard, because he didn’t really understand. He just felt like his brother was getting all the attention and all the extra stuff. He didn’t really understand the pain that he went through in the hospital and how tough it was for him.
It was really hard! It tears you from one child to another to trying to figure out what normal life is, and just trying to get some normalcy was really hard.

Mother of Robert, age 16

 

I try to make it special
I try to make it special. If it is a doctor you need to make frequent visits to, then have a pleasant beginning and ending. Maybe bring along a favorite story book to read to your child while they’re waiting to see the doctor, and then when they’re going in to the appointment, to ease the anxiety, remind them of the special place you’re going to visit when you leave. Maybe a favorite park, restaurant or other place.

Mother of Kristin, age 4

 

I just really didn’t want to go anywhere else but here
Her older sister had also been here many years ago because she had to have ureteral bilateral implants, and Val and her younger sister had to be tested to make sure they were okay. So she already had had medical stuff done here and I just really didn’t want to go anywhere else but here. And she goes “But I’m not a kid!” and I said “It doesn’t matter, you’ve already been there.” You know, I just once again wanted to come here. There was no option that I would go anywhere else but to come here, and her doctor was fine with that.

Mother of Val, age 19

 

Her sister was a little young, she didn’t really quite understand the whole thing. Even now, she doesn’t quite understand, thinks it’s kind of gross. But she took the hospitalization in stride. We made sure that either she was at my parents’ house, her grandparents, or she was with my husband. We planned it for the summer, so there was no school really involved.

 

Mother of Alexa, age 16

 

A little warning
This appointment hurts. She knew that she was going to have it again, she already had it once. She calls it the hurty test. And I said, “Yeah, you are going to have to get that done again,” but I didn’t tell her this morning, “Today is the day of the hurty test!” I waited until we were on our way here. That’s gotten easier – she’s kind of used to it, which is good and bad. But if I know in advance I try and tell her.

Mother of Leah, age 4

 

He takes it in stride
He’s really good. Like I said, he does not shy away from anything. He does what they tell him to do. He does not get anxious. I’m really lucky. I’ve seen kids where just the thought – they get so anxious and so nervous and so stressed out by the unknown. And this kid has been poked and prodded and, you know, so many indignities he’s endured, and he just takes it in stride. He does not get stressed at all, not at all.

Mother of Henry, age 12

 

 We live five hours from Boston, and now I’m leaving my three other kids the first week after school starts. That was really hard. My third kid, who’s now in college, she’ll tell the story: I took her to school and I no sooner got home when I get a phone call from the nurse that she doesn’t feel well. This is the day we are leaving for Boston! She doesn’t feel well, she has a headache and a stomachache. So I go back up to school like a half hour later and I bring her home. And I just said to my sister, “Do what you need to do. She’s in third grade. If you need to keep her home for the whole time we’re gone, keep her home!” – because you just have to let that go! So that was easy. And it turned out she went to school every day.

 

Mother of Kayla, age 14

 

He wrote her letters the whole time she was in the hospital
I have a notebook that I started keeping, with all my conversations with doctors and stuff – because I was talking to so many different doctors and I was trying to remember what they said to us and it was just too confusing. So I started making a notebook, and every time I talked to a doctor, I’d write down what they said and take notes. We had that notebook with us, so my husband took back part of it, and from the time we started doing pre-op stuff, he wrote notes to her: “I’m sitting here waiting,” or “You look much better today,” or “I felt so bad for you because you were crying,” just different stuff like that. So that’s a really nice thing that she has from him of the whole time we were in the hospital…We still use the same book, and I told her she could read it any time she wanted to, but I don’t know that she’s really quite ready to read it all.

Mother of Kayla, age 14

 

It’s all about what’s good for the kids
She did get a UTI from the Foley, and when they re-cathed her to get a specimen, sure enough she had pseudomonas. And the doctor said to me, “You better get out of here while you can. They can treat this at home. I know you have kids at home. Get out of here before the cultures come back in the morning, and you might have to go back to the hospital at home and get the IV antibiotics for the treatment of the pseudomonas, but at least you’ll be home near your kids.” I just thought that was wonderful. It was all about what’s good for the family and what’s good for the kids. You know, the whole thing was really a very positive experience.

Mother of Kayla, age 14

 

I didn’t want to leave him at all
Between my parents and my in-laws, we had our other kids taken care of. My husband and I swapped off sleeping here. I slept here probably a lot more than him but he relieved me a couple nights. I didn’t want to leave Dylan at all.

Mother of Dylan, age 16