First, if you haven’t read part 1 of our exclusive interview series, “Rays of Hope,” check it out now! In part 2, we continue the conversation with Erin Peterson about her daughter Everly’s diagnosis with the rare Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS).
Our director of national clinical growth, Amy Braglia-Tarpey, asks Erin about life before and after she discovered Gus Gear and wonders what advice she would give to other parents in similar medical situations. They even cover Erin’s upcoming children’s book release, which we promise to keep you updated on!
ABT: What was life like before and after Gus Gear?
EP: When Everly first had her central line put in, it was in her leg. There are only so many access points in your body that can be used, so you have to be careful. Everything we do is sterile. However, as she got older, she started to crawl and move more and tuck her legs in while she slept, so the line would kink and beep.
She also had her backpack for her TPN, and we were trying some liquid food at the time. It weighed 13 pounds with everything in it, so when she started to crawl, we were holding that heavy backpack. For basically four years, we followed her around because she couldn’t wear it on her own. Soon after, she had her line placed in her chest.
At this point, we hadn’t heard of Gus Gear yet. We were trying different things so if she crawled away quickly, we had time to grab her backpack and prevent the central line from being pulled out. A lot of medical kiddos have medical trauma. Anytime we have to go into a hospital or a clinic, even if it’s not a surgery, it’s a trauma to our child. We fear it all the time, and any pull of that line is dangerous.
About a year after she had her line placed in her chest, another MMIHS family heard of Gus Gear and recommended it to our Facebook group. We jumped right on it. Anything we could do to keep that line safe, we were going to try. We ordered one, and it was a God-send!
Oh my gosh, the fact that it was easy to put on, easy to wash, easy to make fit to her body, and it had an extra layer that held her line in… You could just tell it was very well thought out. Using it gave us peace of mind that she was safer than she was before.
Another reason to be careful with central lines is that it can’t get wet; if any covering comes off of it, it’s no longer sterile. Not only does the Central Line Vest help keep that line in place, it also protects the chest. We felt confident that even if she was going to get a little bit wet — let’s say it starts raining — she has an extra covering to protect that sticker over her central line.
ABT: What does Everly like to do for fun these days since she can move around more with the Vest?
EP: There are many things Evie loves to do that I wouldn’t feel comfortable with her doing without the Central Line Vest. She loves to dance. She loves to play tennis. Her favorite thing is just to be outside. She loves her scooter, she loves to swing, and as she’s getting older, she’s out and about a lot more. She’s in second grade full time with a para who watches her line.
When you are on TPN for 16 hours a day, there’s only a little window where you can do everything you want without a backpack on. The fact is, she’s becoming much more comfortable doing things with her backpack on because she wants to be included. Knowing that underneath all she has going on, Gus Gear is giving her a lot of extra protection is amazing.
Just last night, she was on a scooter with her backpack and my husband was walking our dog. The fact that she can just live somewhat of a normal life, knowing there is something there to keep her safe is more than we could ever ask for.
ABT: That’s incredible. My daughter is in second grade as well and it sounds like your daughter is doing the very same things my daughter is, which is fantastic to hear because so many of these kids feel limitations with their central lines and carrying their backpacks around.
EP: She’s found her way. I would say, as she’s getting older, she’s also doing a really good job of advocating for herself and teaching people about why she has this backpack on and how important it is to be careful with it and not touch it. I think helping her advocate and teach others has given her the confidence to be out and about even when she’s hooked up.
ABT: It sounds like you’ve had an insane number of hospital visits over the years. Do you have any tips for parents to make those visits, either to the hospital or for medical procedures, more manageable?
EP: I would say my number one tip — and I did not figure this out until two years ago — is to type up a medical resume. Every time we go into the hospital, specifically the ER, but other appointments too, the doctor comes in and says, “Tell me about MMIHS.” Because they type her name in and there are probably a million pages of hospital visits for this [very rare] syndrome.
On her resume, I have her name, insurance, all the medications she’s on and the dosages, and all the surgeries she’s had too. I have doctor's notes from all of her home doctors, just anything we can give them to help them understand Evie. Another thing in that resume is that our pediatrician wrote that 100.4° is our threshold and that if Evie has a fever to go into the ER because you have to be sure it’s not related to her central line. So now, when we go in for that fever, it’s step by step from our pediatrician on what tests to run and the plan, depending on the results.
What would have been a ten hour ER visit has dwindled down to 2 or 3 hours if it’s something we don’t need to be there for. That’s because the doctors have all the information in one place.
I also have an emergency bag with everything I might need for Evie. Funny story — One time in Omaha, I had this emergency bag and Evie tripped and fell and scraped her knee and I had to go out and find her a bandaid. Because in my emergency bag I have g-tubes and an extra central line, and ostomy covers — all that, but no bandaid. So my advice is to put bandaids in the emergency bag.
In general though, emergency bags are amazing. I always bring that bag, so then if I forget something, I know I have extra in the pack. And, get the bag as a roller cart!
ABT: That’s such a great story — Don’t forget those band aids!
EP: I had everything else in this emergency bag but I couldn’t heal a cut.
ABT: Other than remembering to put bandaids in the bag, what do you wish you had known at the beginning that you know now?
EP: The number one thing is that there are going to be tough days, but they’re not going to last forever. That first year of Everly’s life we were in and out of the hospital all the time. We were trying to figure out her body and everything just felt so hard and kind of gloomy.
I was a first-time mom just trying to figure out how to be a mom and all of a sudden my personal and professional life was shut down. I was at home trying to keep my daughter alive. Everything was scary. Emotions were high. Then I didn’t have a job. We were trying to live on one salary. I always say it’s the perfect storm. If somebody had told me, “It’s not going to be like this forever,” it would have been nice.
Sometimes it’s hard to know where to turn and seems like that feeling will never end — that it’ll always be this way. I try to remember, even on the hard days, it’s going to get better. You’re going to grow so much, find resources, find people. In the end, I’ve gained such a different perspective on life from my daughter, and it’s one I wouldn’t trade for the world. We enjoy life so much because we know how precious it is.
Another big thing is to take it one day at a time or even one hour at a time. Life can seem too big with a syndrome like this. Trying not to look too far into the future has helped my mental health and helped us figure out how to move forward.
ABT: That’s a good lesson. We should all do more of that.
EP: It’s hard. The farther we get in this journey, the more we learn. The more strategies we put into our toolbox.
ABT: What are your hopes for Everly?
EP: She’s the most amazing kid. She is so happy. She is so tough. Whatever she does, I just want her to be happy. She loves school. She loves to act. We’ll continue to support her in who she is and what she wants to do. Happiness is all I want for her.
I actually have a children’s book coming out in two months on happiness. It stemmed from Everly because we were in the car one day and she said, “You know what I do sometimes when I feel sad? I go to my own world where there are flying unicorns and talking horses.” And I said that’s my book. It’s different strategies for kids to use to feel happiness. Hers is number seven in the book and she illustrated it. She’s been working with me, helping us finish this book and get published. She’s helped so many people in our community and in our family to understand what life is all about. I owe it to her to continue to support her in whatever she wants to feel happy.
ABT: What are three words you would use to describe Gus Gear?
EP: Safety. Everly was in a dance performance one day and she had a dress with little straps so we tried to do something different without wearing the Vest. It’s interesting because both she and I felt so weird about it. She felt almost like she was missing a piece of who she was because she wears Gus Gear 24/7. We have about eight of them now that we switch out. She doesn’t really go a second without having them on.
Easy. The company is so easy to work with. I’ve emailed before; I get emails right back. When I order, they come in the mail so quickly. The website is easy to work through. Efficient may be a better word. Gus Gear is efficient in all that they do.
I would say happiness. Our family is all about trying to be happy and Gus Gear has done such a wonderful job of helping kids and families who are going through so much find happiness in their day. That’s all we could ask for. We will use it as long as we can, because we‘ve had nothing but wonderful success with this Vest.
ABT: Thank you for those kind words, Erin. And thank you for sharing your family’s story. It’s been incredible to watch for Sarah, our founder here at Gus Gear. And it’s been incredible for me to hear more about it for the first time.