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Interviews
Margaret Wells
Price, Utah
Interviewer
You're down here in Price Utah, basically the premise of our story has to do with access to healthcare and you are caught in a unique situation where you are the mother of Ashland who has some pretty special needs. Can you kind of talk a little bit about her situation?
Margaret Wells
Okay. Ashland has two problems, she has Spina bifida and she has a chromosome abnormality that's pretty rare. It's a partial trisome 2P so she has developmental problems that come from her chromosome and she has physical problems that come from her Spina bifida so she has to see lots of specialized doctors that we don't have here so we go to Primary Children’s.
Interviewer
How old is Ashland?
Margaret Wells
She's fourteen.
Interviewer
You've obviously been dealing with this for fourteen years and how has the situation with access to specialty care changed for you or has it?
Margaret Wells
There are a few doctors that come here to town now that we can go and see. But most of what we see is at Primary Children’s so we can go there. They have what's called 'Spina bifida Clinic' and we can go on that clinic day and all of the doctors that she needs to see are at the clinic so we don't have to make a separate appointment and go to this office and this office and this office, we can just go to the clinic and see everyone she needs to see.
Interviewer
How long does it take to get from Price to Primary Children’s?
Margaret Wells
It takes about two hours.
Interviewer
Has Ashland ever had any emergencies come up where you would have to drop everything and drive up there?
Margaret Wells
She does. Mostly when she was little. We used to have to do that a lot when she was a baby. Like we'd have to just go on the drop of a hat. But now that she's a little bit older some of those problems have settled out and so we don't have to go as often and we don't have to go out of the blue as often, like we usually know that we have this appointment or this thing that we have to do and then we can plan to go. But sometimes we have had to just...when she was a baby I used to keep a suitcase packed all the time. Because one time I left and went with nothing and so I decided that wasn't happening again, so I used to just keep the suitcase so I could just grab the bag and go.
Interviewer
Has the situation changed a little bit as far as access to services here in Price?
Margaret Wells
There a lot more things at our hospital here. They are all the time kind of working to try and get different equipment and different machines and things so there are some tests and things that we can have done here now that we used to have to go to have done. So we can stay here and have that done here.
Interviewer
Having a child with such special needs, what impact does that have on your life?
Margaret Wells
Well we...there are some things that we just can't do because she can't do it and so the rest of us don't go and do it. So sometimes there are things that the boys would like to do or we would want to go to this place or go to that place but we don't because it's too big of a hassle or when we go we have to take so much stuff and so we have to take extra time or like if we were going to go on a long trip that you would normally just get in the car and drive, we can't do that with her because she can't sit that long. So we have to take longer to go and we just have to do things different than we would do otherwise.
Interviewer
Your whole family is around here or from here, tell me how your support system works.
Margaret Wells
My family lives about 20 minutes from here and my husband’s family all live just five minutes from here and then we have really good neighbors and we have friends and we have people at the school. So when we need something you know we always have somebody that will come and there's somebody that can pick up the other kids at school or there's somebody that can make sure they get to dancing or to the ballgame or whatever they have to do. So it's a big deal for us to have that around us and one time I just remember one experience when Ashland was a baby and she got sick and it was kind of in the evening and we took her out to the hospital and they decided that she needed to be flown to Primary Children's. So my husband went with her on the airplane and it was like 11:00 at night and I was going to have to drive from here to there by myself. So I just called my parents and my mom came and got the little kids and took them and my dad just dropped everything and went with me. And that...you know anyone in my family would do that so that's a lucky thing for us to have somebody that's just willing to drop whatever and come and do whatever we need and help us out so that we can go with her and take care of whatever she needs.
Interviewer
What are some of the advantages of just living in a smaller town, a rural community?
Margaret Wells
Well I just think it's a slower pace of life and it's not so crazy and we don't have to fight the traffic and we know our neighbors and we know everybody that lives on the street.
Interviewer
Your husband works at the power plant? The coal comes out of the ground here and turned into power and then shipped off to California. Can you talk a little bit how people living in rural areas actually benefit people who live in more urban areas?
Margaret Wells
Well, everybody has to have power and the power has to be made where the coal is and so that's why the power plants are where they are and so that's why we live here because that's where his job is.
Interviewer
How about the idea of...you have Ashland with special needs, have you ever thought about moving up to Salt Lake where you'd be closer to treatment?
Margaret Wells
We did think about it at one time but we just are happy here and this is where our life is and so we just make it work the other way. We go when we have to and we're glad that we're here.
Interviewer
How do you feel about making it work?
Margaret Wells
We just feel like the benefits that we have here...because we have a good support system and we have a really good doctor here, a pediatrician who can take care of most of what we need. We have our family, we have our friends and so we just feel like it's worth making the extra effort to go when we have to so that we can enjoy the rest of it while we're here.
Interviewer
How about the concept of insurance. You actually are lucky that you have good insurance and does Ashland qualify for Medicare or Medicaid?
Margaret Wells
She qualifies for Medicaid. By herself she qualifies because she has a disability, so the rest of the family doesn't but Ashland does. So we have good insurance, my husband has good insurance through his work and then she has that that works as a secondary insurance just for her.
Interviewer
And then tell me a little bit about some of your day. What is your routine?
Margaret Wells
Ashland basically is total care. We have to do everything for her. She has to...she's non-verbal so she doesn't talk; she doesn't walk so we either have to get her in a wheelchair or we have to carry her. She can't feed herself so we have to feed her. She has to be catheterized every four hours so we have to do that for her. So we bathe her, we basically just do everything that you would do like for a baby to take care of her.
Interviewer
Can you kind of expand on how stressful that could be on your family and sometimes you would need a break from that?
Margaret Wells
It takes quite a bit of time and so sometimes if we have to be somewhere at a certain time or whatever than that just puts the pressure on because you can't push her you know, if she decides she's going to eat slow or whatever it's not like you can talk to her and say "we're really in a hurry today", you just have to go with it and be willing to let it work out however it does. So sometimes its hard for us to get places where we have to be because it just takes that much time to get her ready and then she has some procedures and things that she has to have done in the evening so we have to always make sure that we're home in time to get that done, in time to get everybody to bed and whatever.
Interviewer
You have a big operation or surgery that's coming up pretty soon. Can you talk a little bit about what's going to happen?
Margaret Wells
She's going to have a surgery. She has Scoliosis in her back, so she's going to have a surgery to help straighten her back that will help her to sit straighter and to be able to breathe better but it's a really big surgery so she's going to be in the hospital for an extended time and then after she comes home she'll have to just stay at home and she'll have to be in a special bed. So when we go like that we have to make sure that everything that the boys that are going to be home is taken care of like I have to make sure there's somebody to pick them up from school and that they know the days they have to get to Cub Scouts and to dancing and to all of those kinds of things and make sure that if they are going to have a field trip at school that whatever they're going to need while I'm gone is taken care of before I go. So we have to find someplace that they can stay at night and somebody to get them to school and so all the things that I would just ordinarily do myself then I have to make sure there's somebody here to do that because I'm not here.
Interviewer
As far as the actual surgery, are you nervous?
Margaret Wells
I am nervous.
Interviewer
Can you talk a little bit about that? What your trepidation is?
Margaret Wells
I have a friend who has a son who had this same surgery done and she told me that it's the worst thing she's ever done but it's the best thing she ever did for him. So I just have to keep thinking that I really feel like it's the right thing to do and when it's over it’s going to be better for her. And so I just think it will help her to feel better and so we just have to keep looking at that know that it's going to be hard between now and then but when it's over it's going to be better.
Interviewer
How hard is it for you to have to be away?
Margaret Wells
It's hard. Sometimes it's really hard...I'm used to being here and so when they get out of school or whatever then I'm not here to say "how was your day", "what did you do", "did this happen, did that happen". So you miss out on things and so it's hard.
Interviewer
Another thing that struck me is how frightening it must be to know that you're at least two hours away from real critical care?
Margaret Wells
Sometimes it's kind of scary and sometimes they would call Primary Children’s and talk to the doctors and they would say...one time our doctor here in town said to me "they want you to come and they want you to come right now. You need to leave right now". Well I couldn't leave right now because I had another little boy at home and so I said, "I can't, I have to go home and make sure he's taken care of". So then I said, "Is she going to be okay?" Because the message they sent to me was that "you need to leave right now and you need to come straight here and if she has problems you need to stop somewhere on the way". Well, you know it's kind of scary to thing you know...so I had to say to them "what kind of problems is she going to have?" and "am I going to be able to get from here to there because I can't leave right now". So it is scary. A lot of things that happen to her I know what to do but when it's something like that maybe I'm not going to know what to do. So if I'm in the canyon and something happens I...you know, I can't call for help. There's nobody there.
Interviewer
What kind of transportation to they provide?
Margaret Wells
Sometimes they do Life Flight and they'll just send the helicopter to get them and I don't know if it's still here but for a time there was like a fixed-winged airplane that was here that they could use for sometimes and sometimes they'll just take them in an ambulance so that they have somebody there if there’s trouble.
Interviewer
How long has the hospital been here?
Margaret Wells
A long long time. There's been a hospital here actually my whole life.
Interviewer
I just wanted to see if there is anything that you wanted to add that people watching need to understand about the needs of specialty care?
Margaret Wells
We're just really fortunate because we have a good working relationship with the people at the Spina bifida Clinic so if we need something I can call there and they will call our doctor here in town and a lot of times unless it's really a serious emergency or something we can get it worked out. So then I'm not worried about if she's going to...you know so we can talk to them on the phone, we talk to them on the phone a lot and they kind of talk us through things and then we know if we really have to leave and go or if it's something we can kind of work out and make work.
