Archive for the ‘Youth Advisory Council’ Category

Mason’s story: How to cope when your sibling is the patient

Tuesday, April 16th, 2013

By Mason Stoltz

My brothers and I were not expecting to be without a mom and dad for 99 days. But that’s sort of what it felt like when my sister was born extremely prematurely. Suddenly, our world was turned upside down and we had to take on a lot more responsibility than we were used to. When my parents weren’t at work or asleep, they were at Children’s. So, as you can imagine, it dramatically changed things for the three of us kids who were at home.

Mason holds his sister, Katie, for the first time.

Here are some of the ways we learned to cope with our “new normal”:

  • My older brother met with a counselor at school. This gave him someone to talk to at school who really knew what was going on in our family. This person was able to offer suggestions on how to deal with stress and still stay on top of things at school.
  • We read books as a family that helped us all to understand what was going on in the neonatal intensive care unit (NICU) where my sister was and a little bit more about the challenges she was facing.
  • We visited Children’s often and took advantage of the awesome services that are designed for siblings and family members. For example, did you know there is a Sibling Play Area at the Minneapolis location loaded with fun toys and activities for siblings to play with? It is open to siblings of a Children’s hospital or clinic patient, ages 2 years and up.  Siblings can be checked in for up to 1 ½ hours, twice a day. The staff there was super nice and had really great activities and crafts for us to do.
  • We would make things for my sister.  All patients at Children’s have their own private room and it is meant to be their “home away from home.” We had a lot of fun drawing pictures and making get well posters that we could hang in my sister’s room. I hope it cheered her up and let her know we loved her. I think the nurses and doctors were able to get a better insight into our family by personalizing her space a bit.
  • During my sister’s hospitalization, we had a plastic box at our house that we pretended was an isolette (like the one my sister was in at the NICU). My 4-year-old brother liked to pretend he was a doctor and took care of his teddy-bear patient, the way the doctors and nurses were taking care of my sister. If you want more ideas about how to creatively and simply teach kids about the complex issues and procedures that happen at a hospital, talk to a Child Life Specialist. They are a wealth of information and some of the most valuable people at the hospital, in my opinion!
  • I liked having my own picture album of my sister that I could show to my teachers and friends. It almost became a morning ritual in my classroom for me to share the latest developments with my sister. It felt nice to be able to educate my friends about her situation and I felt their support as a result.

I hope these suggestions might come in handy for you if you have a sibling in the hospital. Just remember, even though your sibling might look different in the hospital, they are really the same person.The more you can do to still interact with them the way you would if they were at home, the more comfortable you both will feel. Many times you can still play a game, watch a favorite show, share jokes over the phone, make paper airplanes, do a craft, celebrate a birthday, and make a memory even while they are going through something difficult. You can be a part of their prescription back to health.

Mason, 13, is a member of our Youth Advisory Council. 

Posted in NICU, Patient Stories, Youth Advisory Council | 2 Comments »

Patient to patient: How to manage school work when you’re hospitalized

Tuesday, March 12th, 2013

Olivia, Youth Advisory Council member

By Olivia

I’ve been a patient at Children’s my entire life (17 years). I’m also on the Youth Advisory Council (YAC) at Children’s Hospitals and Clinics of Minnesota. This is my eighth year as a part of that. YAC is a group of kids and teens who are either patients at Children’s or family to patients here. Our job is to make the hospital a better place to stay and to heal. Because of our experiences, we all understand that the hospital is not where anyone wants to spend their time, but we try to make it a little better and more comfortable.

I was born early at 29 weeks and suffered from brain bleeds at birth. This caused me to develop a condition called Hydrocephalus, which is also known as water on the brain. Hydrocephalus affects everyone differently. It mainly causes headaches, but the headaches are caused by pressure in the brain, which, if not corrected can lead to brain damage.

Because of this diagnosis, I’ve had to undergo over 70, yes 7-0 brain surgeries (all at Children’s) to attempt to fix or at least help the complications from the condition. There’s currently no known cause for Hydrocephalus, but the primary treatment is the placement of a shunt. A shunt is basically tubing that is placed in the brain, which drains the fluid from the brain to the stomach area, which relieves pressure and makes the headaches less painful. With Hydrocephalus, you’re basically looking for a happy medium of pressure (not too high or too low) all the time. With more than 70 surgeries in just over 17 years, that amounts to a lot of time in the hospital.

As a veteran patient and a member of YAC, my job is to try to help kids who are or have been in the hospital. By writing this blog post, I hope to help with something other than just “getting better” or “enjoying your stay.” I want to address something that is very important and also very difficult: Keeping up with school when you’re absent because of health issues. Whether that’s because you’re an inpatient or just don’t feel good enough to be at school, staying caught up can be so hard. I’m a junior in high school, so I’ll mainly address high school students. But my advice applies to those in elementary and middle school.

Be proactive: If you know you won’t be in school, talk to your teachers ahead of time. ALWAYS keep teachers updated, even if it’s just a quick email about little stuff. They’ll be much more willing to work with you if they’re kept in the loop. Let them know what’s going on, why you can’t be in school, and when you think you’ll be returning to school. Share as much as you’re comfortable with.

Plan ahead – if you can: Depending on how serious your medical situation may be, you may not be able to do homework while in the hospital. If you know that’s the case, make sure to plan for that and make a plan for when you will do the work. Having your teacher help you create a plan may also be helpful – for both of you.

Talk to your classmates: If you know friends are in your classes, they can gather homework for you and even tutor you if needed. That way, when you return you kind of know what’s going on.  This is how I’ve survived 11 years of schooling and 17 years of hospital stays.  Everyone’s situations are different, so do what works for you.

Prioritize the work: It totally depends on the situation on whether you can complete homework in the hospital. It depends on how you feel, how hard the curriculum is, how much medication you’re on and how busy you are with treatment while there. When hospitalized I try to prioritize when I feel at least somewhat decent. If there’s homework that I find easier or won’t take long to complete, I try to get that done during my stay (and sometimes even get help from my nurses)! But if there’s homework I need help on, or don’t feel up to doing, I try to schedule a way to do it (and get help on it) once I’m discharged.

Communicate early:  If you’re unexpectedly hospitalized (which has happened to me plenty of times), it can be really frustrating and stressful, just from a medical standpoint plus you have school to worry about, too. At the beginning of each semester or when I get new teachers, I make sure I have their contact information. That way if and when I need it, I have it. If I’m not expecting to be admitted but am, the first thing I do (once I feel good enough) is email my teachers. Most teachers are very willing to help you out. Once your teachers know, you can figure out a plan together and everything will be just fine. Education is very important, obviously, but I’ve learned that the main thing is to always focus on getting better before anything else.

Start early:  If you have a chronic condition and think you might be hospitalized often, my biggest piece of advice would be to figure out a system while you’re young. Especially before high school if you can, as classes get harder, so does staying up with everything.

Good luck with everything, whether it’s educationally, medically or otherwise, and remember you can do anything you put your mind to. Don’t let anything (like being in the hospital) stop you.

Posted in Neurology, NICU, Patient Stories, Youth Advisory Council | 4 Comments »

Ally’s journey: How pet therapy helped me heal

Thursday, January 17th, 2013

By Ally Gillen

I’ve had a very eventful 14 years. My life has been full of happy, exciting and life-changing events that have made me who I am today. One event stands out that has changed my life the most.

When I was 10, I was sent to Children’s Hospitals and Clinics of Minnesota with mysterious symptoms that my pediatrician could not figure out.  At Children’s I saw many doctors including an infectious disease specialist and a rheumatologist. After many tests and procedures, the rheumatologist determined I had juvenile dermatomyositis. It’s a rare auto immune disease that affects the muscles and tissues of your body. My case was one of the worst my doctor had ever seen and from that point on, I started my 49-day stay at Children’s in St. Paul.

Karlos, the pet therapy dog, visits Ally.

It was no fun lying there in the hospital bed 24 hours a day, seven days a week.  I could not move (my muscles were so inflamed) and that made it even less fun because all I could do was watch TV. By the second day, I felt like I had pretty much watched everything.  Luckily, many people came to visit me including therapy dog teams, volunteers, and my family. Just seeing their faces made my days easier.

I loved visits from pet therapy dogs the most. I looked forward to their visits every day.  I missed my own dog from home so much and their visits helped me to miss her a little less. A special occupational therapist (OT) at Children’s learned how much I loved seeing the dogs and started to use them in her therapy sessions with me. At first all I could do was pet the dogs, but as my muscles got stronger, I would brush them, dress them, paint their toe nails and play tic-tac-toe on their backs. It was so much fun; I hardly knew I was working on just the things the OT wanted me to learn. The dogs helped me to get better, and I loved working with them.

We were so inspired by how much the therapy dogs aided my recovery that my family began training our family dog, and we now have a therapy dog of our very own!  In March 2011, our dog Angel passed her Pet Partners certification and now visits Children’s each week with my mom. This summer I got a new puppy of my own that I’m training to hopefully be our next therapy dog. After I finally left the hospital, I still got to work with a therapy dog in my OT sessions as an outpatient. I had fun doing obstacle courses and many other activities with the dogs.  It was so much fun that I looked forward to my OT sessions, and never once told my mom that I did not want to go.

Ally, Angel and Mickey

Throughout my life, there have been joys and challenges. During the rough times, I have always found a way to make the best of them.  I know that with the support of my family and friends I can get through anything.  As I get older I will carry the lessons I have learned throughout my life with me and share them with all the people I meet along the way.  I am hopeful that I can become an OT myself someday and work with therapy dogs and their owners to help other kids just like me!

Ally, 14, is a Youth Advisory Council member at Children’s. You can hear her talk more about pet therapy here. Learn about our Pets Assisting with Healing (PAWH) Volunteer Program here.

Posted in About Children's, Patient Stories, Youth Advisory Council | 2 Comments »

Mark’s story: Making my voice heard

Wednesday, January 2nd, 2013

By Mark Olson

Mark, middle, cuts the ribbon at the opening of the new teen lounge.

I was born with transposition of the arteries in my heart and had surgery to repair them when I was four days old. In fifth grade, I had another surgery to repair a narrowing of my aorta. And in November 2010, I got a pacemaker. It’s possible I’ll have another surgery in a few years to make my aortic valve stronger because it’s expanding and beginning to tear.

I’m only 18.

Given the number of medical issues I’ve faced during my short life and still face, I’ve learned how important it is to advocate for yourself in the hospital. It’s important for a few reasons. First, your doctors and nurses then know what’s going on with you and can help you. Second, you can help the hospital itself improve.

One of the ways I advocate is by participating in the Youth Advisory Council (YAC) at Children’s Hospitals and Clinics of Minnesota. I’ve served on YAC for three years. I love Children’s, but I joined YAC because I thought I could make the hospital even better.

I believe I’ve made a difference in the lives of patients at Children’s. One way I’ve done that is by helping with the creation of the new teen lounge on the Minneapolis campus.

At meetings, I’m not one to be shy. I’m always asking questions. When I know a friend is going to the hospital, I ask him or her to give me feedback. How was the visit? Could Children’s have given better care? How? I bring the answers back to YAC.

Someday, I see myself advocating for others. And it’ll be at the bedside. I’m interested in going to medical school and specializing in cardiology. After my years of experience being a patient and a YAC member, I think I’d bring a unique perspective to the medical field.

I often tell people, “If you want something done, the only way people can know you want something done is to tell them. You’re the only person stopping something from happening.”

Mark Olson, 18, is a Youth Advisory Council Member at Children’s Hospitals and Clinics of Minnesota and a patient.

Posted in Advocacy, Patient Stories, Youth Advisory Council | 2 Comments »