I don’t know if you can get used to it but it gets a little easier as you go
I think after the embolization, we were worried. “Oh my God, this took this long, how long is the debulking going to take?” And worried—any time you go under anesthesia, it’s kind of scary. At this point, in the past two months I think he’s been under like 4 or 5 times at least. It’s a little easier knowing that he’s done it that many times prior.
I don’t know about debulking, that’d be scary, but it’s still a little uneasy every time…I don’t know if you can get used to it, but it gets a little easier as you go. Not surgery-wise, but he has another surgery coming up in a couple months that’s going to be probably just as scary…There’s not much you can do, you just kind of have to deal with it. Pray and hope that it goes well, basically.
Mother of JT, toddler, CLOVES syndrome
She likes to know what the plan is
She likes to know what the plan is. She doesn’t want to know too far in advance, but she also doesn’t want to have too short a notice, so that’s been a real balancing act helping her figure out what amount of time that is, usually it’s about two weeks. And she can kind of intellectualize it and she gets it, which is good.
One of the things that we were concerned about with this trial was all the blood work she has to have done, and that’s a huge stressor for her, it’s really the worry about getting the blood work done. But she was able to say, “If this is maybe going to mean that I don’t have to have more surgery down the road, I’m totally in,” so that was huge for her. We’re just really trying to help her use her voice and kind of be her own advocate now because she’s nine.
Mother of Riley, child, CLOVES syndrome
Tons and tons and tons of stress
Working while trying to manage all this, hugely stressful. The actual in-the-hospital stuff was initially stressful, but I feel like after doing that a few times, you get that and you kind of understand it and you kind of know where you can push back and where you can’t push back and what’s negotiable and what isn’t.
I think initially that that was a stressor for us; you know, waiting in the waiting room is always awful. I think a lot of people are like this—I can totally do it when I’m in it, like I can totally be the crisis girl and do whatever we need to do. It’s the waiting for that to happen, waiting for action or the time leading up to it or the time afterwards is usually when I kind of fall apart, lose my marbles. There’s tons and tons and tons of stress.
Mother of Riley, child, CLOVES syndrome
There’s always concern about procedures
Mom: There’s always concern about procedures.
Dad: We freaked out the first time, at home. And then probably the first treatment, we didn’t know what to expect. And then the second time I freaked out was about the bowel surgery in January. That kind of worried me. Treatments don’t bother me, but the bowel surgery, that had me worried.
Mom: There’s always worry but it’s like people ask us all the time, “How do you do it? How do you deal with this every day?” But I mean, what are we going to do? Sit at home all day and cry about it? You deal with what you’ve been given. You know life goes on, you can’t sit at home and worry about it all the time. We still live everyday lives just like everybody else; ours just are a little more stressful and…
Dad: Less convenient.
Mom: Yeah, than everyone else’s
Family of Michael, child, Blue rubber bleb nevus syndrome
We don’t want him going in blind
We talk about his health a lot. I mean, it’s a big issue in our house, just because everything we do revolves around that, so it comes up. But we try not to talk about it all the time; we don’t obsess over it by any means… He pretty much knows. We’re really open about things, if he’s going to have procedures, because we don’t want him going in blind.
We learned the hard way that if we tell him about things he usually handles them better than if we just take him in and lie to him because if we don’t tell him, we get there and he’s going to scream from the unknown. He will just scream, not knowing what’s going to happen, he’ll always assume it’s something bad. But if we tell him, he knows it’s going to happen. We tell him from the beginning, it’s going to hurt or it’s not going to hurt; it’s something you’ve done before, so that he’s prepared, he knows and he does a lot better that way, usually.
Mother of Michael, child, Blue rubber bleb nevus syndrome
We did the same routine
I know it’s not possible for some people but we did the same routine, we stayed at the same hotel, we pretty much scheduled the procedures for the same day of the week, and it was helpful. Even though you are away from home, everything is still kind of semi-scheduled the same. You drive down at the same time, stay in the same place, we found that it really helped our daughter too to go to the same hotel that she was familiar with, same schedule, what we would do certain days.
We’d get there, and then the next day would be pre-op and then after that would be procedure day. The very last time we went we stayed at the hotel next to the hospital because we had a 4 month old as well at that point and we found that switching that routine, she just did not do well with that at all. She was also a little bit older so she kind of understood things a little bit more. But definitely the routine, if you have to travel there many times, try to stick to the same place, trying to do the procedures around the same times, because when you mess that schedule around it just messes with everything, at least it did for us the last time.
Mother of Grace, child, Sinus pericranii
Your special hospital book
The last trip that we did where she was old enough (she was just over 3 at that point) where she may have kind of remembered that she went there and that she would get hurt or whatnot. We talked to one of the Child Life specialists, and they suggested taking pictures of all of the steps that she had to go through at the hospital, the pre-op lady, what she had to do during pre-op, the different places she had to go to for the procedure, and then make a book about it to help her for the next time she had to go.
That kind of helped her because we were like “oh we’re going to take this picture so we can put it in your special hospital book” so that did help her a little bit for that, but luckily we haven’t had to go back.
Mother of Grace, child, Sinus pericranii