Lily’s Story

By Tony V., Lily’s Father

lily_gownI have to share our story if for no other reason, than to give proper praise, and thanks for the incredible, loving and quality care shown not only to my daughter but to us as parents as well.  My 3 year old daughter (adopted from birth), Lily had to have 2 procedures performed on the same day due to her scoliosis. One was to snip a Filum that was wrapped around the base of her spine and the other was to have a MAGEC rod fused to her spine to correct a curvature.

As parents, my wife and I tried to do all the things we could think of, and/or were recommended to us in order to try and prepare Lily for this major event. We attended the Pre-Op tour the weekend before her surgery and she was able to get a better idea of exactly what the process was. She was particularly excited about being able to ride an electric toy car (in her case, she wanted the electric motorcycle), into the surgery room.

The day of the operation(s) came and through no one in particular’s fault, she never did get to ride the motorcycle into the operating room (more on this later). The procedures took more than 7 hours and could not have gone better according to her doctors. From the moment she was sent to the PACU, it was blatantly obvious how much care and true concern was given, not only to Lily, but to us as parents. To say that this made it easier and more comforting would be an understatement!

lily_walking.pngAny and all questions or concerns that we had were addressed immediately as well as with true compassion for our situation. Once we got past that first night of recovery, Lily was admitted to her room on the 8th floor for continued recovery and monitoring. Before leaving the PACU, Lily informed us that she never did have her ride on that motorcycle and was kind of bummed out. One of the PACU nurses overheard this and told us that if she wanted to come back down when she was feeling better, they would certainly let her ride it and they were genuinely concerned with the oversight.

The loving care and attention of each and every nurse and caregiver that was assigned to Lily, was simply awesome!!! It is thanks to them that I can tell you Lily was improving daily, beyond what even the doctors had expected and certainly, better than I could have ever expected…so much so that she was discharged 2 days in advance of what everyone expected!

lily_motorcycleGetting back to that motorcycle ride…The staff made it a point to bring Lily back down to the pre-op area, where a doctor (who was about to go into the operating room area to prep for a procedure) stopped in the hallway and assisted Lily as she mounted that motorcycle…and even walked around with her until she couldn’t have smiled any more than she was at that moment. It is a picture that will remain fondly in my mind for many, many years to come, and a moment that Lily herself will not soon forget!

Lily has been home for 3 days now and I am truly convinced that she is only recovering as well as she is, because of the honest compassion and loving care that was shown by every single person involved in her care!

So, as a parent, I am forever grateful for what you’ve done for Lily and for us. It gives me great hope that there are still so many people that do what you do for the right reasons. You will never know the true extent of my gratitude! Thank you from the bottom of my heart!

Connecticut Children’s Center for Global Health: A Conversation with Dr. Silverman

BECOMING THE CENTER FOR GLOBAL HEALTH
silverman 1Adam Silverman, MD is an emergency medicine and critical care specialist at Connecticut Children’s. He has also recently been named the director of the Center for Global Health at Connecticut Children’s Medical Center. Together, both he and newly appointed associate director Karen Callahan BSA, BSN, MHS, RN, CPN will aim to build upon the mission of the Global Health Initiative.

Though the Center for Global Health is a new entity at the Medical Center, improving health outcomes for children around the world has always been a core mission of Connecticut Children’s. What once began as a volunteering opportunity for physicians and medical staff has evolved throughout the years into something much greater.

The establishment of the Global Health Initiative brought to fruition an abundance of ongoing activities and resources, including the annual Global Healthcare Fair, Global Health Film Festival and a wide variety of program support. As interest grew, so did the need for a designated center…the Center for Global Health.

“We have a responsibility to our families, our communities, our country and the world. We have unique skills that are unmatched outside of this country,” said Dr. Silverman. “The inequality in healthcare for children that exists in the world is a tragedy and we can all do something about it.”

training_silverman blogDr. Silverman focuses his time on investigating how critically ill children are cared for in the emergency department as well as improving the coordination of care amongst various providers. In addition, Dr. Silverman provides care to children in Haiti and develops methods of increasing hospital staff participation in global healthcare endeavors.

After Haiti was devastated by a massive earthquake in 2010, Adam Silverman, MD, flew to the impoverished nation to help. Since then, he has gone on over 10 medical missions to Haiti and organized several more.

He and others from Connecticut Children’s have volunteered with Project Medishare at Hospital Bernard Mevs in the Haitian capital of Port Au Prince and have volunteered with Konbit Sante to support improvements in newborn and pediatric care at Justinien University Hospital in Cap-Haitian. Having an ongoing relationship makes all the difference.

“They know us, they know Connecticut Children’s, our level of expertise and the spirit in which we come, so we can be much more effective with these partnering organizations and the Haitian doctors and nurses relative to someone who comes only once,” Dr. Silverman says.

THE NEED IS GREAT
Dr. Silverman says that clinicians traveling to Haiti for the first time can expect a significant culture shock.

presentation_silverman blog“Port Au Prince is only 90 minutes from Miami, but it is one of the most underserved places in the world,” he says. “The difference in the lives of those people from those in the United States is just astounding.”

While Hospital Bernard Mevs serves both adults and children, Dr. Silverman and others from Connecticut Children’s provide mostly pediatric care. Perinatal infections are quite common, so many children have hydrocephalus, and there is a dearth of neurosurgeons to treat it. Respiratory illnesses, infections and major and minor trauma are also common. Many infants are born at home or in tents, and mothers and babies often have fevers.

There are no laboratory facilities to do cultures, so visiting clinicians treat infection with whatever antibiotics are available and hope it will be effective. Access to radiology studies is limited. There is a CT scanner that sometimes works, but there are no on-site radiologists.

“We have limited support there compared to Connecticut Children’s, but many people find it inspiring and liberating to realize how effective they can be without state-of-the-art equipment and facilities,” Dr. Silverman says. “We can actually provide pretty good care with a lot less.”

ONGOING CARE
As a volunteer with Konbit Sante providing medical expertise at Justinien University Hospital (JUH), Dr. Silverman is part of a collaborative program that takes an in-depth look at newborn and infant care and works with the residents and staff to improve outcomes. In fact, 2 years ago, Dr. Silverman and Vic Herson, MD and a team of Connecticut Children’s volunteers trained staff members in newborn resuscitations and then more recently trained that same staff how to be newborn resuscitation instructors so that the process would become self-perpetuating.

But here’s the truly incredible thing in this age of technology: their involvement doesn’t end when their flight returns to Connecticut. Every month, Dr. Silverman and his colleagues at Connecticut Children’s work with Konbit Sante to review clinical cases with the hopes of improving care and providing monthly video-based conferences to staff and residents on the care of infants at that facility.

“It truly is addicting. It actually makes me better at my job here,” said Dr. Silverman. “I find myself more patient, more compassionate, and more understanding of the context of my patient’s lives.”

A GLOBAL RESPONSIBILITY
group shot_silverman blogWhile rewarding, Dr. Silverman admits it’s not always easy.

“Seeing children die from relatively straightforward medical issues that would be survivable across the border in the Dominican Republic or here in the United States is extremely tough. The thing is, almost everyone down there knows it. The doctors and nurses are educated, thoughtful and dedicated but between a lack of resources, lack of general education about when to seek medical help and poor infrastructure it can become very difficult for them to continue to strive for the outcomes they know their patient’s deserve.”

April 2016 will be Dr. Silverman’s 15th trip to Haiti. When asked how many children he has helped, Dr. Silverman admits he has lost track. Even so, he’s the first to point out that 20 days a year is not enough time to make a big enough difference. Instead, he says the difference he’s making in the world is better measured in the doctors and nurses he has helped train, so that they can train those who are helping children in Haiti year round.

To learn more about the Center for Global Health at Connecticut Children’s, please visit http://www.connecticutchildrens.org/resources/about-us/center-global-health/

#CTChildrensTurns20: Scott Organek

In anticipation of Connecticut Children’s 20th Anniversary on  April 2, Scott Organek, Director of Children’s Miracle Network Hospitals at Connecticut Children’s shares his experience since joining the organization on January 15, 1996!

IMG_1817In the early 1990’s a young family friend was hit by a car while riding his bike home from school. During his recovery I visited him at Hartford Hospital every day and he became like a younger brother to me. When he was fully recovered I chose to start volunteering at Newington Children’s Hospital.

I was there for a year or two when one day the Foundation needed help cleaning some wooden boxes for the Miracle Balloon Project. I soon started volunteering a lot of my time with them and to be honest never really thought about working there until they called and said they had an opening I may be interested in.

Without giving it a second thought I applied for that job, went through the interview process, and started here on January 15th, 1996. It was an entry level job, which was good because I had no experience in this line of work, and I took a 1/3 cut in pay from what I was making in my previous job. I ended up working three jobs that first year. I worked here during the day, another job at night, and yet another job on the weekends, but I never regretted it for a second. I knew this was a special place and that I was meant to be here.

That first year here was one I’ll never forget. We moved from Newington to Hartford, combined forces with Hartford Hospital and UConn Health Center and became Connecticut Children’s Medical Center. I got to help lead pre-opening tours where we had big stars hanging from the ceiling with numbers on them. We would stop at each star and read the corresponding section from our tour books.

I got to be a part of the grand opening black tie event on the first and second floors around the atrium. During that event I had the honor of being the escort for Dr. Burr Curtis, former President of Newington Children’s Hospital. (He had long since retired and was not getting around very well, so needed me to help him with a wheelchair.)

IMG_1815Some things I’ll never forget from our early years:
~The first time I heard a mother call her son “tumor boy” in jest. I was shocked at first, but quickly realized they were dealing with a potentially devastating situation with humor.

~My first telethon, when I was on air with a check and facing the wrong way. Mark Davis from News Channel 8 had to tell me to turn around, so everyone could see the check.

~Filming a piece for our telethon and standing in the hallway outside OT/PT with a patient mother whose son had a tumor in his spine that had moved up to his head. I asked her what departments they visit here and she said “Too many to list, but I’ll be damned if he’s visiting the morgue.” For the record, she was right…he’s doing pretty well.

~My first Radiothon when I was sweating bullets because they wanted to interview me on air.

~The first time I had to do a presentation for Children’s Miracle Network at one of their national conferences. I had to do it three separate times and I was SO nervous during the first one that it was horrible. I feel sorry for those that had to sit through it.

~Hearing a patient who I knew sing “Hero” on stage during HuskyTHON in front of a thousand UConn students.

~Going to my first Miracle Ride meeting at our offices on Charter Oak Street in Hartford and meeting some people that I will call friends for the rest of my life.

~The first time, and just about every time after that, that a family told me that I made a difference in their lives. It really hit me because I’m not a doctor, or a nurse, or Child Life, or a medical staff person in any way.

~Being the Easter Bunny the first 6 or 7 years we were in Hartford.

~Ryan, who I first met as the Easter Bunny, and then later was the first patient that I really knew that I had to say goodbye to. He is my hero to this day.

114 - Copy (2)Thanks to Connecticut Children’s I’ve been able to experience things I never thought I would have the opportunity to experience. Some have been really cool and some not so much. Many of them have had me in tears for good reasons and not so good.

During my time here, I’ve overcome fears that had lived with me my entire life prior. Two really big ones are that I used to be incredibly shy and deathly afraid of needles…now neither of those are anywhere near being true. I say to this day that “I have the best job in the world” because I get to work with amazing people (our staff and our community partners) and I get to do it for the most inspiring people (our patient families.)

Thank you Debra Campagna for taking a chance on me 20 years ago. When I asked why you hired someone without any experience at this field, you said “Because you have enthusiasm and I can teach you everything else.” I appreciate you more than I can ever share. I miss you. Rest in Peace my friend.

Super Sibling Saturdays at Connecticut Children’s

By Isabelle Endicott

Isabelle joins our blog to share her experience attending a Super Sibling Saturday at Connecticut Children’s United Technologies Family Resource Center and how it benefited her son, Hayden.

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Our younger son Rylan was born with congenital heart defects and required open heart surgery. We have spent quite a few days in the hospital and continue to visit to see many different specialists. Our older son Hayden is a trouper and usually accompanies his younger brother during these visits, when the focus is on Rylan.

Super Sibling Saturday was a wonderful reason to bring just Hayden to Connecticut Children’s to enjoy the family resource center. We were overjoyed that when you first walk into the over sized family room, with its calming colors and its amazing fish tank, you feel removed from the hospital. It is such an interesting place, with so many resources, including toys, games, books and interactive computer games. Hayden immediately began reading one of his favorite books in a green swivel chair. He looked right at home.

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The event benefited Hayden in so many ways. He was able to meet other siblings who have experienced what it is like to have a brother or sister in the hospital. He is only 4, and it was so nice to see him open up so much and really benefit through hearing from the other kids. There was a lot of giggling and laughing as the kids worked on puzzles and created colorful spin art. Then the kids took a break to have the yummy lunch that is offered.

As a parent, it warmed my heart to see my son really enjoying his time at the “helping hospital.” I was also glad of the opportunity to talk casually with other parents of children with medical needs.

I would absolutely encourage other families to come because it is such a positive experience for the siblings to be at Connecticut Children’s for a fun event—and not just for another appointment–on a day when it is just about them!

Visit http://www.connecticutchildrens.org/patients-and-families/utc-family-resource-center/ to learn more about the UTC Family Resource Center at Connecticut Children’s! Interested in registering for an upcoming Super Sibling Saturday? Please call 860.545.8116 or email pmclarney01@connecticutchildrens.org!

Ava’s Story

IMG_6173By Katrina M., Ava’s mom and Connecticut Children’s employee

When I first started working at Connecticut Children’s I remember seeing a white rolling crib pass by me in the hallway and thought “When I have a child, I hope they never have to be in one of those.” I never thought that a few years later I’d be staring back at my 18 month old daughter while she lay sadly in that exact crib.

I’d like to think that everything happens for a reason and that is why I was lucky enough to become a part of the Urology team at Connecticut Children’s. My daughter Ava was born a happy, healthy full term baby with not a hair out of place. Around her 1st birthday we began to notice an odd pattern of sicknesses and vomiting that I couldn’t just leave alone. After multiple occurrences, she was finally rushed to the Emergency Department at Connecticut Children’s where an ultrasound found Hydronephrosis, an inflammation of her Kidney. Of the millions of diagnoses that could have possibly turned up for Ava, her problem was something that I saw day in and day out at my job in the Urology Department.

The team in the ED did a wonderful job helping us remain calm while Ava was transitioned from the Emergency Room to an inpatient unit on MS6. After her initial discharge, we had two additional tests where we discovered that Ava had a Ureteropelvic Junction Obstruction, commonly known as UPJ obstruction, which was causing the inflammation of her Kidney. I knew in the back of my mind that Ava would need surgery but I waited for Dr. Kim to confirm those thoughts when she reviewed her test results.

IMG_6178Ava was scheduled with Dr. Christina Kim for a Robotic Pyeloplasty to repair her obstruction.  I never once worried about the outcome of this surgery…I knew Dr. Kim would have no problem repairing her obstruction as I had heard so many success stories of her robotics cases in the past. The day of her surgery came and, like any parent, I was scared and felt so bad that our poor baby would be put through so much. After I handed off Ava in the operating room to her team of nurses and surgeons, I began the long waiting game. The nursing staff was amazing and provided my husband and I with occasional updates throughout her surgery.

Ava’s surgery was completed in 5 hours and she returned to the PACU sleeping quietly in that same white rolling crib. Naturally, we expected that she would be sore, uncomfortable, and unhappy. As we transitioned from the PACU back to the inpatient floor, we were prepared for a long night of crying and pain…we never expected that we’d have the best night’s sleep that we’d had in months…but that we did!

Ava slept peacefully through the night without the slightest sign of pain…it was almost too good to be true. When she awoke in the morning my husband and I were both waiting for the pain…waiting for the tears…waiting for the “long haul”…and it never came. Ava was up and out of her crib and ready to go home by 8AM. Our nurses were so surprised and pleased with her recovery that they all undoubtedly said we would go home that day. We were indeed discharged later that day and we returned home with a child that seemed completely untouched!

IMG_6175_blogAva returned to her normal (and very active!) self almost too soon to believe. I credit her fast and painless recovery to the robotic procedure. Her tiny incisions healed faster than ever imaginable and her level of pain was so low that she didn’t even need pain medications!

I couldn’t possibly say enough good things about the staff in the OR, PACU, and MS6 as they are not only incredible at providing quality care to our patients but also amazing people that I am proud to call my coworkers!

Five Questions with Kelly Foy, MS, CCLS

In honor of Child Life Month, Connecticut Children’s Child Life Specialist, Kelly Foy answers a few questions about the importance of Child Life and why she loves her job!

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What is a Child Life Specialist?
A child life specialist helps patients and families understand the experience of being in the hospital. A four year old’s comprehension is going to be vastly different than a fourteen year old’s, and the family needs support and understanding too. I help clarify misconceptions and provide education about unfamiliar concepts, like surgery or a new diagnosis. Child life specialists help prepare patients prior to medical procedures using specially designed materials and age appropriate language. When children know what to expect and are given roles in their care, they are less scared and tend to cooperate more, helping everything go better. We use play in our practice every day. Play helps children cope. Whether they are here for a quick outpatient visit or for weeks at a time, play helps normalize the hospital environment. During a play session children can safely express their feelings, even if they cannot verbalize them. Some of my most meaningful interactions with patients have come during play sessions.

Why did you choose this as a career?
As a child, I had health issues of my own and spent a lot of time in and out of hospitals. I was scared not knowing what was happening and had lots of questions that no one answered. Then I met someone from the child life department. They helped me understand what was going on inside my body and even made the hospital FUN. During one of my stays at Boston Children’s, my child life specialist built a  cardboard brick wall in my room’s doorway. Everyone cheered as I broke through, celebrating the first moment I could leave my room in weeks. It was at that moment, at eleven years old, that I knew I wanted to be a child life specialist and help patients and families. I feel that my experience gives me a greater depth of understanding for my patients and what they are going through.

DSC_7658 copyLike our physicians, nurses and staff you see the whole range of human emotions on any given day – how do you manage that?
I work in hematology/oncology, so I never know what to expect when I come to work each day. It’s funny – even though it’s my job to help patients prepare for the unknown, I deal with the unknown myself on a daily basis. Child life specialists work closely with each other and with social workers to make sure that we are providing the best possible care for our patients, and support for each other. I go to yoga for stress relief, and am very lucky to have strong support systems both at Connecticut Children’s and at home. After a hard day, I try to think about at least one positive impact I made that day, whether it was helping a patient cope with a difficult procedure or having a tea party with a scared toddler. It helps me remember why I do what I do.

What is one story that stands out during your time here at Connecticut Children’s?
When I was fairly new at my job, there was a patient that came once a year for an infusion. As I met with the family to explain my role, it became clear that the patient had many unexpressed feelings about receiving the infusion and about his disease. I came up with the idea to create big bulls-eye targets in his room. We labeled them with all the things that frustrated him about living with his disease. Things such as “being different,” “not being able to play sports,” and “missing school.” Then we used Nerf guns to shoot the targets. Afterwards, we listed all the things that made him special and unique. This was challenging for the patient, but once we started, the positives outnumbered the negatives. This intervention helped the patient identify and share what he was feeling, in a safe and productive way. And the best part? He handled his IV placement like a champ! It was one of my proudest moments as a child life specialist.

Do you have any personal connections to Connecticut Children’s? If so, what is it?
I was actually a patient at Connecticut Children’s when I was younger. I was treated in outpatient clinics and as an inpatient. Some of my best memories occurred while I was admitted. I remember decorating my IV pole with streamers, pictures and dangly decorations; having dance parties with the nurses; and watching fireworks on the 4th of July from a corner window. We made our own celebrations, even if we couldn’t be with our friends, or at home. It’s just incredible to be working alongside some of the nurses that took care of me when I was younger. Collaborating with them to create the same sense of fun and healing that I experienced here is a pretty amazing full circle experience.