Patient Engagement Tool – The Care Partnership Pyramid

It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, has implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for Children, which aims to help foster conversation and understanding in how to best allow for parents and medical staff to work as a team.

 

Many infants born with congenital heart disease (CHD) are transferred to the Cardiac Intensive Care Unit (CICU) immediately after birth or diagnosis for stabilization. As the mothers are still recovering from the delivery, many babies will undergo their first of many surgeries. Following surgery, these newborns are at risk for life threatening complications, require minimal stimulation, and around the clock medical care. It is very common for the medical team to ask families to remain hands off during this critical stage. The period of time spent in this phase of care is variable and for some can be several days to weeks. As the baby heals, the medical team is able to lessen sedation, remove lines and tubes, and gradually increase the amount of stimulation. This process of de-intensifying support can be lengthy and sometimes unpredictable leading many families to describe it as a roller coaster of emotions. Continue reading

Teen Topics – Q&A: Your Questions Answered

Back in September, patients and families submitted the questions they most wanted answered. We caught up with members of PCHA’s Medical Advisory Board, at last month’s Transparency Summit, to ask those questions. Check out the videos below, featuring Dr. Marino, Dr. Madsen, Dr. Gurvitz, and Dr. Sood’s answers on teen and young adult topics.

 

 

Dr. Brad Marino – Transition, Staying in Care, Protecting Your Health

Dr. Marino is an attending cardiac intensivist at Lurie Children’s Hospital. He is a Professor of Pediatrics and Medical Social Sciences at the Feinberg School of Medicine at Northwestern University, also serving as the Director of the Center for Cardiovascular Innovation in the Stanley Manne Children’s Research Institute.

 

 

 

 

 

Dr. Nicolas Madsen – Activity, Drugs & Alcohol, Related Conditions, Staying in Care

Nicolas L. Madsen, MD, MPH joined the Heart Institute at Cincinnati Children’s Hospital Medical Center in July 2012. He is the Vice Chair of PCHA’s Medical Advisory Board.

 

 

 

 

 

 

Dr. Michelle Gurvitz –  College, Tattoos, Contraception, and Transition.

Dr. Gurvitz is an assistant professor of pediatrics at Harvard Medical School and a staff cardiologist with the Boston Adult Congenital Heart program at Children’s Hospital Boston and Brigham and Women’s Hospital.

 

 

 

 

 

 

 

Dr. Erica Sood – Behavioral Health Topics/School Resources

 

Dr. Sood is a pediatric psychologist in the Nemours Cardiac Center and Assistant Professor of Pediatrics at Sidney Kimmel Medical College at Thomas Jefferson University.

 

 

 

 

 

Thank you, Dr. Marino, Dr. Madsen, Dr. Gurvitz, and Dr. Sood, for your willingness to share your knowledge and experience!

 

Recap – Mental Health

We often shy away from discussing Mental Health, but in this series, patients share their stories and their struggles. We also hear from a psychotherapist, who has personal experience with CHD. 

Brittany’s Story, Living with PTSD

Beyond Survival, the Struggle with Anxiety and Depression – by Sydney Taylor

Courtney’s Story, A Mom’s Perspective

Redefining “Of Course” – By Christina Barbera

Catherine’s Story

A Q&A with Austin Wilmot

Recap – Donate Life Month

Read the stories of families affected by organ donation, those who received the gift of life and those who chose to share it. 

The Wait – By Bill Coon

Becoming a Donor – By Jennifer Weiner 

The Call – By Kathleen Sheffer

Choosing the Ultimate Gift – By Emily Inman 

An Extraordinary Miracle of Science – By Dr. William T. Mahle

A Tribute to Tristan – By Charity Roberts

An Indestructable Spirit – By Melissa West 

 

Teen Topics – Advocating for Yourself

Annaleci was taught at a young age how to speak up for herself. She found, as she grew up, just how important that is , especially when it comes to her healthcare and advocating for her needs.This week, Anna shares her story with us. 

 

My life growing up, from an outsider’s point was hectic, but this was my family’s normal. From the moment I was born nothing went as planned. The two young parents were expecting a healthy baby and instead 8 hours after I was born, were told that their child only had a 10% chance of living. Little did my parents know, that moments like that will be their normal for the rest of their lives. Even though I survived the first 2 surgeries after so many complications, my family and I have always lived on our toes. Just waiting for the next 6 month checkup to see if we were in the clear or if it was time. While I grew, I became more and more conscious of myself and that what I was born with will never go away.

My parents were the type to always answer my questions with complete honesty. Along with that they pushed for me to have a great understanding of myself. I don’t just mean the medical definition of my defect, but how to tell if something was wrong with my body. My mother, especially, taught me how to put how I was feeling into words, which, in return, taught me how to really talk to my doctors myself. From a very young age, I remember my mother telling me how important it is for me to do the talking at appointments. I am extremely thankful for that now because when I go to the doctors, I go in by myself and have the ability to sit down and advocate for my health.

I was not warned very much about the transition into adult care. In the beginning, I felt as if I was going to be clumped into a group of adults with acquired heart problems. I was nervous that I would be over looked, but I made my worries apparent during appointments. I was given a choice between staying with my cardiologist or switching to an adult CHD specialist. I decided to go with the specialist, and so far I’ve noticed that during my appointments we talk a lot more about my social life and what my future looks like. Also usually there is a social worker with us, who talks to me about transition, the mental emotional sides of things, and future plans/goals. During these recent appointments I have learned how important it is to be able to speak for myself. Along with that, I have gained a greater appreciation for all of the hard work that my parents have put into giving me the best education and medical care growing up. It’s not easy juggling everything from appointment planning to navigating the medical system. There are support systems put in place that really do help you navigate, what feels like a never ending pile of paperwork and questions. I have learned this past year the importance of knowing myself, and to accept that this is my normal, and that’s ok because I am extremely lucky to be where i am in life today.

 

Annaleci Lamantia is18 years old and lives in Western New York, in a small town named Avon. She was born with a complex CHD called Truncus Arteriosus Type 2. Her first open heart surgery was at only three days old, a second surgery was at two years old, and her most recent was at twelve years old. Annaleci has struggled throughout her life with chronic pain, a weakened immune system, and depression/anxiety. School wasn’t easy, but with determination and support from her family and peers, she graduated last year. Now at this point of her life, Annaleci is trying to figure out this difficult transition into adult care and working on managing her health on her own.

 

Teen Topics – Preparing Your Child for Independence

Last week, we heard from Abby Hack on heading off to college. This week, we will hear from her mom, Janice. Watching your child leave home for the first time can be worrisome, especially with cardiac issues to consider. Janice shares with us how she has helped prepare Abby to take greater ownership of her own care. 

Our cardiac story began about 16 years ago when my daughter was 2.  At one of her pediatrician’s visits, the doctor heard an unusual heart murmur.  The doctor ordered an EKG and discovered that she had an intermittent second and third degree AV block.  The signals in her heart weren’t connecting as they should have been, causing delayed and missed beats.  Abby didn’t show any of the usual symptoms for her condition such as shortness of breath, fainting or chest pain.   In fact, it was just the opposite.  She was a very active kid.  Because she was asymptomatic, we, along with her doctors, decided to postpone putting a pacemaker in and instead monitor the situation.  Our semi-annual visits turned into annual and then biannual visits and still no symptoms.  It looked like she was outgrowing the condition.

Then, Abby started high school.  She joined the swim team her freshman year and started to have chest pain while swimming.  The doctors did the usual tests but the results were drastically different than before.  Her heart rate on the 24-hour Holter monitor averaged 42 beats per minute.  Running full out on the treadmill, she didn’t get above 95 beats per minutes.  The doctors were surprised she wasn’t fainting.  She needed a pacemaker immediately.  Abby received her pacemaker in December 2013 when she was 14 years old.

The surgery was right at a time when she was starting her teen years.  Not long after the surgery, I was at a swim meet for my younger daughter and one of the parents there started talking about the medical issues with their child and how it affected their swimming.  It was a bit of a wake-up moment for me.  Abby and I are both fairly private with our personal lives (our lack of posts on Facebook is one example) and I recognized that it wasn’t my place, as the parent, to be talking about Abby’s medical condition so casually.  She was old enough to decide whether she wanted to reveal that she had a pacemaker, or not.    Unless there is a medical reason for someone to know, I don’t need to bring it up.

When Abby was 15, we attended an event put on by Chicagoland Cardiac Connections for children with pacemakers and ICD’s and their families at Lurie Children’s Hospital.  At one of the sessions, some parents were talking about their kids becoming young adults.  I resolved at that time to get Abby to start taking some responsibility and authority for her medical care.  We started out by having her make her own dentist appointments which gave her some confidence in a low risk setting.

Even before the pacemaker, I always encouraged the doctors to ask Abby directly what her symptoms were. This was really by default as I don’t consider myself having any inner nurse or doctor.  I could do a pretty good job, even with my lack of medical aptitude, to describe her cardiac condition.  But I was caught off guard at one appointment when the doctor asked about her pacemaker.  She replied “I have a pacemaker to address my intermittent high degree atrioventricular block with pacing close to 100% of the time.”  She did a better job describing it than I did!    My encouragement for her to speak up at doctor’s appointments had paid off.

Abby aged out of the general pediatric practice last winter and in the course of changing primary care doctors, it was a good time to also switch over to an adult electrophysiologist.  She wanted either my husband or me to go to the first appointment which was great as it is nice, especially with a new doctor, to have a second pair of ears.  I showed her that she should come prepared with not only copies of previous records, but also a list of questions and concerns.  In fact, she was the one that mentioned that the quarterly readings she does with her remote Medtronic device needed to be changed to the new doctor for review.  She is now keeping her own calendar of dates for visits and pacemaker readings although I also put them on the family calendar so I can remind her just in case she forgets.

Abby is now 18 and is a freshman in college.   She is majoring in global studies and plans to travel the world.  She loves to exercise and her number one criteria in picking a dorm was to be near the recreation center.  Working out is an important aspect of her life and the pacemaker has made this possible.

At age 18, parents no longer have access to their child’s medical records without express permission.  Just like every other parent of a college student, I am helping Abby learn to navigate the health care system both at home and at school.  This is challenging whether you have a cardiac device or not. Ironically, the most difficult task so far has been to get the college health center to accept her immunization records which they kept rejecting on a technicality.  And, we have had a difficult time getting Abby some medication she takes unrelated to the pacemaker.  She has learned a whole new vocabulary about medical records such as “requests for authorization” and that doctors’ offices still use some “ancient” device called a fax machine.

Abby and I found it helpful for me to access her online health record for our family health insurance plan and the online records at the school clinic.  We can log on together to message her doctors or the school clinic as needed.  A few phone calls have been necessary.  Abby is no different than her friends–the hardest thing for teens to learn is that sometimes they need to pick up the phone and call someone.  I also encouraged Abby to visit the health clinic in person which she found helpful.

Her college has a complete tolerance policy meaning that the police can be called for any reason, including drunkenness, without repercussion.  Abby and I talked about the fact that there are bound to be people passed out from drinking on a campus of 35,000 students.  But, it could also be a cardiac event, a diabetic episode, or a myriad of other conditions.  Abby declared she would want to call for help if she saw someone in this situation, just as she hopes others would do so for her in the rare possibility one of her pacemaker leads broke and she fainted.  Perhaps her pacemaker has helped her to learn compassion.

It is now up to Abby to take a more active role in her health and I have every indication she is prepared to be her own advocate.   She still called with a bad cough to see if she should go to the college clinic (the answer was yes!).  But, she understands, and can describe, her cardiac condition and is slowly learning how to work with the school health clinic and her doctors at home.  I have done what I can as a parent and it looks like Abby is going to be just fine.

 

                                                       

 

About Janice Hack:

Janice Hack lives in Chicago with her husband Brad and daughters Abby, aged 18, and Lydia, aged 13. She is the director of a small history museum in suburban Chicago and enjoys volunteering at her children’s schools and for history-related organizations.  In her spare time, she likes to watch PBS shows (especially historical dramas), while walking on the treadmill.  Both Janice and Abby have enjoyed being a member of the Chicagoland Cardiac Connections steering committee, particularly meeting others families who face similar medical issues.  She is grateful for the wonderful care Abby received at Lurie Children’s Hospital.