Feeling nervous
Darius has scoliosis, so they added lower rods into his back and it was a fourteen hour procedure. So before the operation, just knowing how long it was going to be started to raise my stress level. I thought, “I can’t stay there for fourteen hours. There aren’t many things to do at the hospital.” When I got to the hospital, I explained to them that I was really nervous about being in the hospital for fourteen hours. I don’t want to make other people around me uncomfortable because I don’t want to be pacing up and down. And, is it ok for me to leave a cell phone and just go somewhere else, to the mall, home, and come back? But it was fine. It doesn’t make you a bad parent. It doesn’t make you less of a person.
Mother
The biggest stress is when he has his operations. He has had a couple big surgeries. The first one I think I was ok and that was an eight hour job where they put some hardware in his hips because he was so off balance. We were in the hospital for a week. We knew about it for six or seven months, so I mean I was stressed at first and then the closer we got to it and during it I wasn’t because I had so much time to adjust to it. Even after it, Charlie was depressed. He is really close to his dad; he will tell his dad anything. He gets madder at me because I am the one that says, “You have to do this and this.” His dad puts things in a more fun way where I am so structured because I am going everywhere. He didn’t talk to his dad or I for a week when we got home. He had answers such as “yes or no.”
Mother
Anxiety before surgery
He wasn’t doing well in school and we couldn’t connect it to anything. When he came back from school his grades sky rocketed high and we realized he really had been stressed about the operation. He gets anxiety really badly. He had his first operation in December. We were in the Pre op room and the nurses know him and asked, “What’s wrong?” He started crying and said, “I don’t want to stay here.” So when this next operation came the doctor just hit us with the information that he needed hamstring lengthening as soon as possible. On the way home, Charlie just looked at me and he started crying and said, “I need another operation. I have to stay in the hospital.” I told him, “No, it is not going to happen for a while” because he would hold on to that fear and it would bring his grades down. It really affects him. He is petrified of the operations and then we sneak up, “Oh, you are going tomorrow to the hospital for an operation and everything is going to be fine.” It might not be the best, but that is the only way we can handle it with him otherwise he is a nervous wreck constantly.
Mother
Hip surgery
When they told us that she needed to have her hip surgery because she wasn’t being able to walk and she wasn’t developing hips. Even though I was against it, we needed to help her out. And his doctor recommended it, and we said, “Yeah, okay, we’ll do it,” and we did. And the Baclofen pump. That helped her out a lot. Now she’s more relaxed in more extremities. Before, she was all toned in her upper body and her lower body.
Father
Staying with a host family
Emily was in the hospital for a month following a surgery, and then she transferred to another hospital for a few months. While she was there, I was there not all of the time, because her brother was at home. Going back and forth was particularly challenging, but while I was there, I stayed with a host family through Hospitality Homes, which is a wonderful organization. Having that place to go to and the relationship with the family was great, but also not spending all of the time in the hospital I’ve been there, done that. I knew to let go and to have confidence that the nursing staff were competent and that they would care for Emily’s needs, and that the doctors themselves were great. So I felt very comfortable not being there a lot of the time because I knew that they were doing everything they could to help her.
Father
He’s had four muscle release surgeries, and the first one was especially tough. That one involved twelve incisions, and that was a long, long process. He had to get a cast. He had to come in each week to get his abductor spread out, so we came like six consecutive weeks, and of course, coming here the first time we didn’t know the ins and outs–where to go, what to do, where to eat. In actuality, as many times as we’ve been here, I just found out that the hospital has patient rooms.
Father
He makes the decisions on surgeries
We’ve always included him. We’d be crazy not to. Even though Marcus can’t speak, he pretty much makes the decisions on surgeries. What’s really nice is that he has a doctor who always talks to him not like a kid, but like an adult–no baby talk. They pretty much ask him all the questions and answer any questions he has, which he usually pre writes on his Vanguard [communication device]. He’s written quite a few questions on there. The only thing that’s disappointed him is he wanted a video of his last surgery he likes the gross stuff.
Father
We did it when we were ready
We fought the G tube surgery for a while. It was a losing battle, so I think at eight or nine years old he decided he was going to do it because he wasn’t gaining weight and it was taking like an hour and a half to feed him. So, we made a decision and of course we said, “Oh, we wish we’d done it sooner,” but we weren’t ready sooner. We did it when we were ready and when Marcus was ready.
Father
Everybody has a breaking point
Because of what I went through with the surgery he had on his legs, I’m not ready for another surgery. I’m not ready to deal with his hands, you know? Everybody has a breaking point, and for me to go through all that again…I saw him with the epidural. I saw him when they did his hips, and I’m like, for him to come now and have one, two, three more surgeries? It’s been a tough road.
Mother
Heel cord lengthening
The heel cord lengthening was described to us as day surgery. But, the aftermath was–how do I say this? A little bit of work. I went out and I bought a sleep sofa and I stayed on the first floor for a good while because he had a big cast. He was in a wheelchair to go to school, and we worked with the staff on that. He was in the wheelchair for a while, and then he graduated to a walking cast. He could walk, but there were a lot of limitations like for gym and recess. And we had to go into the hospital and do a few casts, with a lot of physical therapy follow up after that. I know there are a lot more surgeries that are far more extensive, but it is important to ask a lot of questions before the surgery about what the post operative period will be like, so your house will be set up appropriately, and you’ll know how long they won’t be able to use stairs or whatever the case is. Also, figure out how much PT your child will need ahead of time because you’re going to have to schedule in additional after school PT.
Mother
For three or four nights after the heel cord lengthening surgery, my son was in a lot of pain from muscle cramping. We had medication for that, but it’s still upsetting to see your child uncomfortable. It was very predictable. The doctors told me how long it would last, what it would be like, and what to do, and everything they told me would happen actually happened. But, you know, it was still difficult even though they had told me in advance.
Mother
We had no idea what we were getting in to
We made the decision to have the surgery because we certainly took the doctors’ information and trusted them that this is what we should do. We have a long history with the surgeon, so we really trusted that this was the next step for Justin. Both my husband and I would say we had no idea what we were getting into when we decided to have this done. We just had no idea how long a process, how long the convalescence is, how different every child’s convalescence is so that there is no real timeline or even expectation that anybody gives us or gave us. I guess because every child’s process is so different and that’s what we’ve figured out.
Mother
Psychotherapy
I’m a psychotherapist so I work with children and adults with emotional issues. So my first thought was, “Gosh, is Justin going to be able to manage the emotional piece that goes along with not only the surgery, but the long haul after it?” So we called the mental health division of the hospital. The psychologist evaluated Justin prior to the surgery. She helped us to see that he really didn’t have anxiety about the surgery. He really didn’t understand what we were getting into, which was a good thing. But I did have concerns about whether he would cope well with the long convalescence. As a result, he sees a psychotherapist himself and he is on Zoloft. So that it just helps him to manage his whole coping with everything he is going through.
Mother
A hard recovery
When we came upon the situation where Justin was maybe two to three weeks into convalescing at home and my husband needed to travel, all of a sudden, we needed to think about home health care people coming into the house to help me. And at that point I learned that they’re wonderful, but they’re only there to one or two hours. They’re not there around the clock with you when your child has to pee at three o’clock in the morning. So it was really difficult. My husband actually had to cancel many of his trips for work so that he could be home with me to help me get Justin in and out of the bed, to take care of different needs. So he was lucky he had a boss that could empathize with this situation and allow my husband to take that work time off.
Mother
Spinal fusion
In 2005, Katie had to undergo a spinal fusion to correct the curvature of her spine because it was starting to impact her respiratory system and everything else. We knew it was going be a rough run, but we did not anticipate what we had to go through and what she had to go through. She spent a month in ICU, most of that time on a ventilator. So after that, her anxiety level is greater when we have to go back to the hospital. Plus she was 13 at the time, so all those lovely teenage hormones and behaviors are all kicking in on top of the fear of “Am I coming home?”
Mother
Care pages
On a Carepage, you can write a little blurb and then you email the password to friends and families and they can log on as much as they want and write messages to Katie. It was huge in so many ways. A) Katie’s siblings, Leah and Kyle, could check in with Katie when they came home from school. And I would try to update it during the day. You know, had a great day today. Did X,Y, and Z–I was always trying to put a positive spin on it because I knew the kids were looking at it. B) It cut down on the phone calls to the hospital room because you can just say the same story over and over and over again. You get tired of it. It was unbelievable resource.
Mother
Running log
We kept a running log in Katie’s room. We recorded any time a physician walked in or a test done or she if she had a good day or a bad day. We just keep a log running because when you do the “hand off”–that’s what we call it when one parent comes in and the other one goes home–it’s really hard to remember what happens over the past 24, 48, 72 hours. Plus, when you come in, you don’t want to be talking about your child in front of her. So that’s one strategy that we use because you’re so sleep deprived, and you don’t eat well, and you don’t exercise–all those things…
Mother
We try to keep her routine pretty much the same. We try to tape her favorite TV shows, which we may not get at the hospital for a couple weeks prior so there is some normalcy. If she’s not in ICU and she can tolerate visitors, we ask visitors not to bring her a gift. But what we ask people to do is to bring an activity to do with her. One of the fun things that someone brought was the pre made pudding, cool whip, a bunch of plastic glasses, and some cookies. Katie made the nurses desert–she enjoyed it and the nurses loved it.
Mother