It was definitely faith, 100% knowing that it was just out of my hands, but you know my mother was there, support from home, my mom’s sister would fly back and forth to stay for stints, my husband was flying back and forth, which I needed to cope. Him just getting better, day in, day out, just staying in the ICU we started to eventually do other things besides just go back and forth to the hospital. Day by day doing what we had to do, knowing that this is exactly where we needed to be to get him out of the hospital, to make him better. Knowing that this is where we have to be right now definitely helped. I finally got to hold him, but it was almost like I didn’t want to break him. Like, “I’m just gonna let y’all do what you need to do” and I’m just there, kissing on him and loving on him. But as long as I knew that everyone was doing their part to make sure that he was getting better and better, that’s all I needed.
– Lindsay, mother of Brian, age 2, Heterotaxy
Allen: The best way to describe it is that 30 hours after the surgery, she was running up and down the hospital floor.
Miranda: And like, swinging from chairs, climbing on things, calling things a balance beam. Our issue was spotting her and having her not fall.
Allen: Our family that came and visited were like, “Did they do the surgery? This is not possible. She was on bypass 30 hours ago, right?” Now I would imagine we are one end of the spectrum, so we feel very fortunate in that way. It’s very much in our daughter’s personality to sort of—you know, pardon the expression, but just kind of give this heart procedure the finger, and run around like crazy. Like, that’s totally her. But it’s nothing short of remarkable as far as we’re concerned.
Miranda: It’s funny because you see that and on one hand you’re so relieved that everything went so beautifully. And on the other hand, you can’t believe it, and I kept looking around saying, “Is she okay? Is this alright? How is this possible? Can she really be doing this all? Did I do all that worrying for nothing?” It’s really true that the waiting and the surgery—I would say the time in the ICU was really tough. Just from her comfort level, she was in a lot of pain, and she was really frustrated at the limitations of the ICU and her own limitations in the ICU. But as soon as she got out, it was like “Phew. Okay. We did it.” And with every single test that they did I was like, “Okay, this really went well.” And it’s really hard to believe all of that all of that waiting and all of that time thinking about it is done.
– Miranda and Allen, parents of Serena, age 2, ASD
The last two times, all she ever asked every single day in the hospital was, “Do I get to go home today?” She asked that every single day, and every single day we’d say “Not today,” it was this sadness. On her second surgery when she was three, you could distract her from it, and when her siblings came in they would cheer her up and we’d go to the playroom and the Child Life Specialist is there and there might be something for her to do and we could distract her that way, but they would go home and she would be like, “I want to go home.” I would say, “I know, but Daddy and I are here, and one of us will always be here” and we’d just kind of distract her again.
When she was four and a half and she had her surgery again, every day she just wanted to go home and it was hard on her, it was emotionally hard on her. She wanted to go home, she was feeling pain, she was vomiting every day it was really hard for her. And again we’re just always as positive as we can be for her. “We’ll get you home as soon as you can. You have to stop throwing up first” or, it’s always very simple but I don’t want her to be afraid to go to the hospital, and I don’t want her to think, “We’re not going to have to go back to the hospital” because she is going to have more procedures. Hopefully as few as possible.
– Erica, mother of Isabelle, age 5, Anomalous Aortic Valve
Yawkey house was amazing, we would go back there some nights and there would be dinner that volunteers had made for us, things like that, that was great. I think the support from the staff making sure that the parents are good as well, you kind of start to build a relationship with the nurses, because you see them every day for four weeks straight. They went above and beyond to try to make sure that we had what we needed and were comfortable, and encouraged us to go get dinner, go get coffee, take a nap, and just kind of helped us let go a little bit too and not feel guilty for stepping out for a minute to go eat lunch or have dinner or something like that.
– Amanda, Mother of Carson, age 5, Heterotaxy
I find being here just at Boston Children’s is like one big family, and that family is awesome. And that includes one of the janitors that comes and looks out for us. When we first got here, I met him and “Oh, where are you from? Oh, do you like cricket?” and he would bring articles and stuff from home about the current games that are going on, and that just makes you escape for five minutes. You’re sitting in a hospital room all day, and that just gives you that two minutes of getaway. I haven’t experienced any other hospitals, and maybe I’m being a little selfish now, but I don’t think I want to because it’s just been so great here that. For us now when we come here it’s not even like coming to a hospital it’s like we’re going home, we’re going home to visit family for a few days. You expect it to be a little institutionalized because it’s a hospital, but it’s not. I would definitely say give it a fair chance, come here with an open mind, and don’t be afraid to talk. There is always someone here willing to help.
– Nick, father of Jade, age 6, Dextrocardia
We used TV a little bit, I had brought books, I had brought coloring books, I had brought a whole bag of different activities. She likes to do crafts. Initially, even when we were out of ICU she didn’t want any part of it, she just wanted to lay there, she was tired. The second surgery was hard on her because she had a lot of vomiting related to the anesthesia, so she was sick a lot. She didn’t have an appetite for most of the time. Then probably three days before we went home she kind of turned the corner and had interest. But I would read to her a lot, I would just kind of talk with her, see if she would play some games the staff on the unit had brought in. The Wii they had brought in, some electrical devices where she could just sit and kind of quietly play, and that sufficed for quite a while. In the end, shortly before we went home, we utilized the playroom on the unit which was great, she did a lot of crafts there. But a lot of small things I had brought, like, go fish, little card games, that would entertain her and give her something to do and then she’d go back to sleep or she’d not feel good.
– Roxanne, mother of Amelia, age 7, Dextrocardia
It is hard to be in the hospital. It felt like living in a fish bowl. We did our best to try and keep a schedule for our son. We did create a schedule for him that included tutoring, PT, OT and Music Therapy. Music Therapy was a break from illness and from all things uncomfortable. It was not only a gift to him but to me too. I’m so thankful for that. We also used to do family dinners on the 8th floor. It was special to just be a family for a moment. Being inpatient can feel very out of control. Someone else is in charge of your child and you are at the mercy of your child’s illness. Providing ways for families to feel somewhat in control is so important. Building structure into the day, when it makes sense, and allowing for family time are a couple ways to do that
– Nicole, mother of Levi, age 7, HLHS
They were ready to let her go home the next day, but she was pretty nervous so she actually ended up being in the hospital for two days. Willow also had an arrhythmia monitor implanted at that time, so one of the nurses come by to show her the information that they get from that. I think she felt reassured being in the hospital because she knew that she was being monitored. It was helpful for her to know that she did have the monitor implanted and how that was working.
Honestly, staying the hospital was challenging because she had IVs in her hands and she had just gone through a really traumatic experience. So normally she likes to read, but she really couldn’t read, or she wouldn’t read, because it hurt her hands to hold the book open, and just mentally and emotionally she was having a hard time focusing on reading. We did a lot of other things, the activity room—there’s a game room on the cardiac floor at Children’s—so we spent some time in there, and she watched this comedy group that she watched a lot of their videos. She needed some distraction during that time. She did have a couple of visitors which was helpful. She didn’t want to be in a hospital gown when her friends came, so we tried to be sensitive to that, and at least let her put pants on.
Child Life was the ones who encouraged her to go to the game room, and there were a couple of people there that were really nice about finding some activities. Especially at this stage of the hospitalization, it was long and hard because she didn’t feel bad. She wasn’t sick per say, but she just had to be strapped up to monitors all the time and sitting in a hospital bed most of the time. So that was challenging to be in the hospital but not be sick, not feel bad. The medical team was pretty good about speaking with her, but there were times when we spoke out in the hall, so she didn’t have to hear everything, and I think that was helpful.
– Catharine, mother of Willow, age 8, Long QT Syndrome
The Child Life Specialists were very good with my daughter. At the time she was two, she would come up and visit every once and a while, and they were so good at trying to explain things to her that was appropriate, and making little stories for her, and picture books that were about the different types of equipment that Johnny would be hooked up to. That was all so helpful because as a parent, you don’t know how to talk to a two year old about something where you yourself are confused and trying to learn stuff. And having that resource to help us in which direction to go with her was huge. I think she handled the situation as well as she did because a lot of the help that they provided. The days when she would come up and spend time at the hospital throughout any of the surgeries, they would provide tickets or something for her to do. So mom could leave the hospital, or dad could leave the hospital to go to the aquarium for the day, or whatever, so it was a good, it wasn’t just a “Oh my brother’s in the hospital, my mom and dad are away from me from week to week,” but she got to have some special time, so we were also very appreciative of that.
I know they helped us with some parking stuff, and even with meals, they provided us with different passes for meals, which helped us out as well, it was good. And even with the community room on each floor, and having activities and providing movies, I always felt like they treated Johnny like he was the only child on the floor, they were really attentive to his needs or interests or what he might want to do, when he was able to get up and move around, when he was a little bit older. So, we definitely took advantage of that.
– Abigail, mother of Johnny, age 9, HLHS
She was only in the ICU one night before we were able to bring her to a step down unit. There was another little girl who had gone through a myectomy the same day who was up and running around much faster, who got out of the hospital much faster. They had some difficulty getting the fluid off of Raegan’s lungs, so we were in the hospital for eight days where originally they had thought it was going to be closer to six or seven. But for the last few days, there was a chest x-ray every day to see where she was, and they left the chest tube in for a lot longer than they would have otherwise needed to.
I think it was by the third day that they had her get up and we walked just across the room from the door to the bed, and then later in the day we added a few more steps and so by the fifth day there we were walking around the ward. We’d do one loop and then at the end it was a couple loops around the ward, going downstairs, going into a playroom. It was amazingly fast in my opinion, how quick kids can bounce back from something like this. And once she was home, we wanted her to lay down but she was having none of it. She was right up and doing everything right away.
– Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker
What really worked best for us for housing, I would recommend—which costs more money—but, the Inn at Longwood Medical which is right next to the hospital. We got a discount rate for surgeries, but for a lot of people it would still be quite expensive. But it was really convenient. One of us could go back there and sleep because one of us would stay in the room with Sierra. You are pretty drained so you can walk half a block down the road go to a hotel room, take a shower and go to sleep. That was great.
Our second surgery, there was some event in Boston and we couldn’t get a room there, we had to stay way outside and it was a real pain. If you do have a surgery coming up, even if it is months down the line, call immediately. Depending on what is going on in Boston it could be filled up with other events, you know meetings. We were more stressed about where we were going to stay, almost to the point where just go into the garage. They have other houses—one of them is kind of far out and the Yawkey House was booked. So figure out where to stay, do that ahead of time.
Also, walk around, or try to. I think within 24 hours Sierra was up walking, but she overdid it a little the first time, sometimes they get nauseous. But they want you to be up and walking as much as you can. They had some game areas and stuff and the lobby area, once we could go far enough, we would go down there and spend some time there. Once you are out of ICU it’s just a matter of killing time.
– Paul, father of Sierra, age 13, Anomalous Aortic Valve
I’d say he was angry. And I don’t think he was feeling that well, and then when they restricted his fluids, he was given those little pill cups. Then I made the mistake of staying there almost the entire time and in retrospect, I shouldn’t have done that. He was 12 and a half, it wasn’t like he needed me to be there every time he woke up. So that was not good for me, that was my fault. Because you know that affected—that just stressed me, and every time there was a complication I was frustrated, and then he was frustrated, and it was not good. So that’s one that I would say, for your own mental health to other parents, you need to get away. Even if you’re not working, even if your child is an infant, go home, see friends. My husband was working so many hours, he just couldn’t, I think he did one night shift in the entire 5 weeks.
– Louisa, mother of Gabriel, age 20, HLHS
As we’ve mentored a couple of other families, one of the things I say is that when we went into the ICU the first time to see him—I talked to them about all the tubes and stuff he would have—I didn’t think about the fact that they take the body temperature down during the surgery. I put my hand on him and he was cold, and I must have reacted because the nurse immediately reminded me that they hadn’t warmed him up yet. For me that was like, “Oh my God, the kid feels like he’s dying.” So I’ve always said to other moms, “Remember, they’re going to feel cool when you touch them. They’re going to feel cool, and it’s just because they take their body temperature down so low to preserve organ function and oxygenation, and that they will warm him up”—because most of us moms have to touch our kid.
– Melanie, mother of James, age 20, Anomalous Coronary Artery