Tag Archives: Gillette Children’s Specialty Healthcare
This past Saturday, more than 150 Gillette patients and their families gathered at Mall of America to recognize, and celebrate, Rare Disease Day. Co-hosted by Gillette Children’s Specialty Healthcare and the University of Minnesota Center for Orphan Drug Research, Rare Disease Day raised awareness of children living with rare medical conditions and the importance of continued research for improved treatment outcomes. As part of Rare Disease Day, families heard from representatives with Gillette and the U of M, and had a blast meeting SpongeBob SquarePants, Dora the Explorer, and other friends from Nickelodeon Universe.
Although this is Minnesota’s first Rare Disease Day, it is celebrated throughout the U.S. and around the world as a way to call attention to the importance of funding for orphan drugs – drugs used to treat unusual medical conditions, but which often don’t make it out of laboratories. This is often because prioritization is put on drugs that would help conditions affecting millions, rather than the fewer individuals with rare disorders.
Here in Minnesota, Gillette—a hospital that specializes in treating kids with disabilities and complex medical conditions—has partnered with the U of M’s Center for Orphan Drug Research since the 1990s to research and develop new treatment advancements for rare medical conditions. Such treatments have already helped thousands of families in Minnesota and beyond, and have potential to help thousands more.
Christmas morning 2011, my water broke one week early, sending us scurrying to the hospital at 2 am and leaving behind our 2-year-old son with neighbors. Four hours later, as the rest of the world was waking up and opening their gifts, my husband and I delivered ours–Kendall Christine.
She was healthy and we celebrated our Christmas blessing–my heart was full of contentment and happiness only a newborn baby girl could fill.
Then the next day, a pediatrician came in with the blow. The “birthmark” on the top of Kendall’s head was actually a congenital nevus. Being in mama-heaven, this news didn’t faze me at first. Seeing my lack of concern, the pediatrician proceeded to tell me this is a big deal and we need a biopsy to make sure it’s not cancerous.
I thought, wait a minute now, don’t go throwing that “c” word into things. Life is perfect, can’t you see? Leave us alone. Go away.
But it didn’t and it wouldn’t.
For me, pity began 6 weeks later with our first visit to see Dr. Wood. This was a defining moment, as I became aware that her nevus was an issue and that it would not be an easy or simple task to remove it. He explained to us the tissue expansion process, which entailed inserting an expander underneath the skin on her scalp and slowly, over the course of many months, injecting this with saline and stretching the skin to a large size. This newly-stretched skin would be used to cover where the mole was once it was removed.
Kendall seemed so fragile and I honestly couldn’t wrap my mind around the reality of this process, but Dr. Wood’s experience and confidence put me at ease. He recommended that we begin tissue expansion once she reached 9-months of age. We considered the options and made the decision to proceed–plans for October 15th were underway.
You could say that preparing for Kendall’s first surgery was much like training for a marathon–a marathon filled with obstacles and hurdles, that is. I knew going into it that I would have to pace myself, that this wasn’t a quick sprint and that we needed to find endurance for the long haul.
I had stayed strong and fought off pity pretty well–right up until the second I laid eyes on my daughter after her surgery. It consumed me in ways that I wasn’t prepared for, yelling at me your daughter looks different, and this isn’t fair!
Those first few days and weeks were painful–painful in ways that I can’t explain or am too embarrassed to tell. Pity told me different wasn’t as good and even different is just plain ugly. People’s doting words of beautiful quickly turned into looks of concerns and questions. I felt like I was constantly fighting off anger and tears that Kendall had to endure all of this and that we were in this situation.
We had a battle, me and pity.
When our 2-year-old son saw Kendall for the first time post-surgery, he looked at her with his big-brown saucer eyes in great concern. We explained to him that he could no longer play rough with sister and that she had an “owie” on her head that he couldn’t touch. I thought he would be upset or lose interest playing with her.
He just looked at me and asked, Can I kiss her?
This was the beginning of a new attitude for me, defining my own views on what beautiful and happiness mean. I was no longer seeking the world’s acceptance or approval because, as my son reminded me, she is already perfect. My perception began to change and over the next month, pity was replaced with confidence–a confidence that told me I was strong, that we were lucky to be in this treatable situation and to take this challenge and to turn it into something positive.
You see, pity did nothing but cripple me. It threatened to paralyze me and prevent me from making the positive response my daughter needed. Only by conquering my own pity was I able to provide strength for my daughter.
I gained confidence as I realized the things I once concerned myself with were no longer important. People’s words or reactions no longer mattered to me. I was reminded that I was being strong and bearing the burden for my daughter so she wouldn’t have to. And I realized that this process was a defining time for our family, but that it didn’t define who we are.
The past three months have involved weekly injections at Gillette Children’s to enlarge Kendall’s expander. I can’t say enough good things about the medical team that surrounded us–they have made this process smoother and easier in every way possible. The fourth floor has been a place of transformation for our family–physically and mentally. Doctors, nurses and other parents look into my child’s eyes and see that she is beautiful. It has been empowering and enabled me to shed my fear of judgment from others, along with judgment from myself.
I have such respect for the children that we see each week and deep admiration for the parents by their side. Whether a child is facing long or short term medical needs, life-changing or life-threatening, I believe what every parent wants is for their child to feel loved and accepted–to know that they can live and thrive through their uniqueness in this world.
Now here we are, in the last stretch of Kendall’s medical marathon. I once thought this journey was about crossing the finish line, but now realize it is about deciding to run.
The Cure Pity campaign gave me the strength and confidence to share Kendall’s journey. When the day comes, I’m excited to tell her how brave she was through all of this, how she rocked our world that Christmas morning and how she continues to teach us valuable lessons about the important things in life.
I hope that when you look at Kendall, you see past the bump and notice her gorgeous deep blue eyes and pink cabbage patch lips. I hope you see a one-year-old who is on the verge of walking, filled with a passion and determination in everything that she does. Ultimately, I hope you are able to look past the differences and see her through the eyes of a 2-year-old.
We’re excited to welcome back the KS95 for Kids Radiothon to the airways on Thursday, December 6 and Friday, December 7! Our 14th annual radiothon will broadcast live on 94.5 FM (and from Mall of America) with KS95′s Ryan and Shannon sharing incredible stories of local children who are triumphing over complex disabilities or childhood cancer.
Your Spare Change Means Big Hope for Kids!
Looking for a fun and easy way to make a difference in the lives of local children? Sign up for KS95′s Change for Kids program today! Collect change as a family, sports team, activity group, even at your workplace. Then bring your collected change to Mall of America during the KS95 for Kids Radiothon live broadcast, December 6 and 7. When you drop off change, we’ll also be handing out Nickelodeon Universe “Mystery Passes” which could get you one ride, multiple rides or unlimited rides at the park!
More than 500 Gillette families, staff and supporters enjoyed an evening of live comedy entertainment last Saturday at Laugh Out Loud Twin Cities (LOLTC). The first-of-its-kind event featured interactive games, a children’s art showcase, a live auction, and even a surprise Flash Mob dance routine.
As emcee, WCCO’s Mark Rosen kept crowds energized throughout the evening, which culminated in a live performance by actor and comedian Martin Short. We’re thrilled to announce that LOLTC raised more than $250,000 for Gillette! Many thanks to all who attended – and to our generous corporate sponsors – for making LOLTC a smashing success!
The Gillette family experienced a sad loss last week with the passing of Mary Bussiere, RN, BSN.
Mary will be dearly missed. Her energy and spirit will not be forgotten and will continue to live among our team and Gillette family.
Over 125 kids participated in the 2012 Kids Triathlon which raised $4,000! Than you to the event founders, planners, and all the participants!
Gillette Children’s Specialty Healthcare is now ranked 12th in the nation for pediatric orthopedics and 39th in the nation for pediatric neurology/neurosurgery in U.S. News Media Group’s 2012-2013 Best Children’s Hospitals rankings. Last year, Gillette ranked 25th and 44th in the two areas.
Gillette occupies the largest market share among Twin Cities hospitals for pediatric orthopedics, and has one of the highest concentrations of pediatric orthopedic surgeons in the nation. Its Center for Pediatric Orthopedics is the largest such program in the five-state region. In addition, each year Gillette neurosurgeons perform more surgeries for children whose spasticity (muscle tightness) impacts their movement than any other hospital in the five-state region.
“There are many reasons we moved higher on this prestigious list, including our low incidence of surgical site infections—especially given the high volume of surgeries performed here,” said Gillette President and CEO Margaret Perryman. “U.S. News has increasingly focused on patient safety initiatives as a key component in its ranking methodology.”
The Best Children’s Hospitals rankings recognize the top 50 children’s hospitals in 10 specialties: cancer; cardiology and heart surgery; diabetes and endocrinology; gastroenterology; neonatology; nephrology; neurology and neurosurgery; orthopedics; pulmonology; and urology. Seventy-six hospitals are ranked in at least one specialty. This is the fourth consecutive year Gillette has been ranked in orthopedics, and the second it has ranked in neurology/neurosurgery.
This year, U.S. News surveyed 178 pediatric centers to obtain hard data such as availability of key resources and ability to prevent complications and infections. The hospital survey made up 75 percent of the rankings. A separate reputational survey in which 1,500 pediatric specialists—150 in each specialty—were asked where they would send the sickest children in their specialty made up the remaining 25 percent.
The full rankings and methodology will be available June 5, 2012, at www.usnews.com/childrenshospitals. The rankings will also be published in the U.S. News Best Hospitals 2013 guidebook, which will be available in August.
Win-It Wednesday: Do you recognize this place at Gillette? Leave a comment with your best guess and we’ll choose someone at random to receive an “I Love Gillette” t-shirt! Remember, you must comment below for a chance to win!
The Sleep Health Clinic at Gillette Children’s Specialty Healthcare is dedicated to meeting the needs of children, teens, and young adults who have disabilities. Our clinic offers comprehensive, family-focused care in a facility that is specially designed for children with complex conditions. Sleep disorders disproportionately affect children who have cerebral palsy, craniofacial conditions, attention deficit hyperactivity disorder, epilepsy, and other neurologic conditions. Often, these children may already have health issues that can be further complicated by sleep problems. Our pediatric sleep physicians work closely with families to resolve sleep disorders and achieve a better night’s rest.
On our Facebook page, we asked you to submit your sleep health questions for Dr. John Garcia to answer. You can read the questions and answers below. As always, we recommend you consult with your health care provider.
Q.What kind of affects can sleep apnea and obstructive breathing have on a child if it has gone untreated for many years? This child is not trached yet but is finally being treated at the age of 11. Can it affect other organs in her body?
A. I address this problem by systems. Untreated OS can cause difficulties with attention and can also lead to daytime sleepiness. If there is a history of seizures, it can make the seizures harder to control. From a pulmonary point of view, I can see increased incidence of pneumonia. Acutely untreated OSA can lead to sedation associated respiratory compromise. OSA can cause reflux. Untreated OSA can lead to right heart strain though this is quite rare. Untreated OSA can lead to metabolic diseases including insulin resistance, obesity, and lipid abnormalities.
Q. Some parents have wondered what to do about night terrors. Can Dr. Garcia provide some tips?
A. Night terrors are a subcategory of parsomanias which including sleepwalking, confusional arousals, and bed wetting. People who sleep too deeply are at increased risk for parasomnias. Good sleep hygiene is key to preventing night terrors. This means regular wake and bed times, predictable nap opportunities and a controlled sleep environment. If these episodes are occurring more than three times a week or are associated with injury then a sleep consultation is an option. Safety precautions including bells or buzzers on a child’s door and outside doors are another option.
Q. I have a sleep question. My son was born with congenital cytomegalovirus and he use to sleep good. Well the doc just diagnosed him with autism. He can go all day w/o a nap and go to bed at 8:00 pm and be back up by 11:00pm ready to go and is non stop until 3:00 am when he falls asleep again until 12:00 pm. I need help and sleep. I have tried to switch his sleeping around but he still is on the go. Please help.
A. About 86% of children with Autism have a sleep disorder, often insomnia. A sleep doctor would be a great place to start, who may recommend a trial of melatonin.
Q. Possible sleep apnea in a 13 year old boy with Downs. We haven’t been able to do a successful sleep test to determine if it is indeed sleep apnea. Any suggestions?
A sleep consultation should help to sort out whether a sleep study is needed. If there are symptoms consistent with OSA but a polysomnogram is not feasible, then overnight oximetry may help determine whether there is an associated severe oxygen desaturation. There are non-CPAP treatments available as well such as high flow if a 13 year old will not tolerate a CPAP
A board-certified sleep specialist, John Garcia, M.D., works with Gillette patients who have disabilities and associated sleep disorders. Such disorders include obstructive sleep apnea, sleepwalking, circadian rhythm disorders, and restless legs syndrome. He uses a combination of behavior management, medications, surgery and other therapies in his practice.
Dr. Garcia is a graduate of the University of Iowa School of Medicine. He completed a residency in pediatrics and one year of fellowship training in behavioral/developmental pediatrics at Riley Hospital for Children in Indianapolis, Ind. He then completed a sleep fellowship equivalent at the Minnesota Regional Sleep Disorders Center in Minneapolis. Dr. Garcia holds clinics at Gillette’s main campus in St. Paul and at the Burnsville Clinic.
His professional associations include the American Board of Sleep Medicine and the American Board of Pediatrics.