From a mother whose child has swine flu

Noelle Dugan, the director of communications at Children's Medical Center, isn't a regular contributor to the blog. Even though she's penned and illustrated her own children's book, we keep her much too busy with other projects to write regularly for From the Red Balloon. But, today, she's not running from meeting to meeting or overseeing communications plans. Today, she's home with a sick child, a 5-year-old who has swine flu. (That's her adorable little peanut on the left.) Noelle's perspective is both more relevant and more poignant than anything the rest of us bloggers could draft today. So, read on:

Yesterday, my 5-year-old daughter Sydney was diagnosed with swine flu. Based on my position at Children's (director of communications), I consider myself pretty well-informed on the topic. I know what we've said about symptoms; who needs to be tested; and when you should seek emergency care. Still, recent reports of children dying from swine flu have even well-informed me a little panicked.

Lucky for me (and you), I have easy access to some of the nation's top experts in pediatric medicine. We're talking the top dogs! The chief nursing officer, the chief of infectious diseases and a list of others at Children's have responded to my concerned personal phone calls as quickly as they have returned my professional e-mails. So, here's what I'm doing to keep a watchful eye on my little one:

• I'm forcing her to drink plenty of water and juice, as well as eating soup. She needs to get as much rest as possible. (Thank goodness for all the shows we've DVR'd. She's enjoying being a couch potato.)
• She's going to have a fever for several days, possibly even a week. So, I'm giving her a fever reducer, which brings down her temperature and generally helps her feel better. If it goes higher than 103, or something that's out of our typical pattern, I'm going to call my pediatrician immediately.
• I'm paying close attention to her energy level. She's sick, so she's more worn down than usual. But, extreme fatigue, coupled with lethargy, difficulty arousing, or being non-interactive can be signs that something is seriously wrong. I'd call my pediatrician to discuss what we're experiencing, or I'd consider seeking emergency services, depending on how concerned I am by her behavior.
  
• Finally, as with the regular flu, the development of pneumonia is a serious complication that can result from the swine flu. The most significant signs of pneumonia are a high fever and difficulty breathing. I'm spending a lot of time lying with Sydney so I can monitor her breathing. If it seems labored, I'll dedicate 30 minutes to more focused monitoring. (Because she's 5, I can ask her what she's feeling. Now, Syd is a bit of a drama queen, so my monitoring is probably the best bet!) Difficulty breathing can mean she's having trouble taking deep breaths or her breathing becomes faster than usual - like she's working hard to breathe. If this is the case, I'll take Sydney to the emergency department at Children's at Legacy immediately.

My friends - the experts at Children's - reminded me our communications team has been working hard to inform the public about the flu. With this swine flu outbreak, the number of kids falling severely ill or being admitted to the hospital is consistent with what we see during each flu season. Even the unfortunate deaths we've seen have mirrored the types of situations we see with the seasonal flu.

But because the H1N1 vaccine wasn't available before the outbreak, nobody is immune, and it's spreading quickly. Thanks to the seasonal flu vaccine, we are able to protect many people from getting the most common forms of the flu virus. And whether it's H1N1 or seasonal flu, the majority of us who are affected by the flu will experience a typical, inconvenient week of fever, tiredness and...no work and no school.

So, that's the swine flu, up close and personal. At least if nothing else, you know you're not alone in the range of things you might be feeling. And although I'm not an expert, I am a mom living it in real time. Stay tuned.

Sydney, get well soon! And Noelle, don't worry. We've got everything under control at the office.

As for the rest of you, if you're interested in hearing more about the flu, download NPR's radio program To the Point. Our very own Dr. Jeffrey Kahn is one of four nationally-recognized panelists on today's program.

Home sweet home

Shaylee Crosson's going home party was fit for a princess - Cinderella to be exact.

Recently I walked into a hospital break room to find a sea of pink presents, banners, a strawberry cake and in the center of it all, a miniature princess taking it in. The 3-year-old stood tall in plastic heels, dressed up like her favorite Disney character.

But lately Shaylee's life has been anything but a fairytale. She was brutally attacked by a pit bull while riding her bike and spent two months undergoing lengthy procedures and intense physical therapy. To keep her spirits strong, visitors of all kinds encouraged her throughout the stay. And her party was no different.

Miss America 2009, Katie Stam, happened to drop by the hospital that day and we couldn't have timed it more perfectly. The two compared crowns and became fast friends.

Watch Shaylee meet Miss America...



After Stam left, Shaylee doled out hugs to her caregivers. While in the hospital, she saw a wide range of specialists including the trauma team, opthalmologists, neurologists, infectious disease specialists, orthopedists and physical therapists. Child life specialists and even a play therapist that helps kids resolve trauma created a special bond with Shaylee. They rotated overnight shifts to help her resolve recurring nightmares.

"Shaylee is very strong," said Kristin Fuhrmann, LPC, registered play therapist. "Even after her accident, Shaylee showed her love for animals by nurturing and caring for stuffed animals during our play sessions."

In the midst of all the celebrating, Shaylee's parents are relieved that, even though she continues on the road to recovery, the sparkle in their daughter's eyes is back.

"This experience hasn't broken her spirit," said Laci, Shaylee's mom. "She's still happy-go-lucky and can light up a room in an instant."

After her goodbyes, the little princess headed home with a sweet ending to her hospital stay.

Small steps and big steps

When Jack Maurer started kindergarten this year, he took what is normally considered a big step in the journey through childhood. But actually, kindergarten could be considered a small step for Jack based on what he’s been through in his young life.

You see, Jack was diagnosed in April 2007 at Children’s Medical Center with Wilms’ tumor. He was operated on the next day. Thanks to the expertise of doctors at Children’s with this particular form of cancer, during 5-1/2 hours of surgery, Dr. Michael Skinner and an oncology surgical team removed a 6-pound tumor, Jack’s right kidney, his adrenal gland and his ureter.

After that, he went through 19 weeks of chemotherapy and follow-up for two years. In August 2009, Jack and his family celebrated two years of him being cancer free, a huge step. He had his last six-month appointment with his primary oncologist, Dr. Tim McCavit, on Sept. 18.

Jack, now 5-1/2, loves kindergarten and has made the transition well from pre-school, said his mom, Amy Maurer. After that, it’s on to first grade.

Jack’s about to take another step in his journey. He’s entering the After the Cancer Experience (ACE) Program at Children’s.

ACE is sponsoring a conference to celebrate its 20th anniversary on Saturday, Nov. 14, at Children’s Medical Center designed for childhood cancer survivors, families and anyone affected by childhood cancer. You can also follow the ACE Program on Facebook.

Hundreds rise up to a tough challenge

Last week we were gearing up for the TX TOUGH 2009 Bike Bash - a 6.2-mile, traffic-free bike ride that started at Victory Park and ran through downtown Dallas. I'm happy to report that hundreds of people laced up their shoes and toughed it out to ride in honor of the patients at Children's.

One such patient is 11-year-old Tatum Null who was out at the event to support the place that saved her life. Tatum underwent a liver transplant in 2005 and since then she has given back by supporting the hospital in a number of ways.

Read more about Tatum and the TX TOUGH event.

Helpful information on the flu

Where's Emily Post when you need her? Someone needs to tell the flu it's rude to show up early. (Come to think of it, it' s rude to show up at all, when uninvited!) In typical years, the virus has hit during the fall and winter months. But, this year, influenza viruses are making the rounds already.

I know it's easy to get nervous about this year's flu season, especially with the new H1N1 virus making major headlines every day. And as a pregnant woman, myself, I'm definitely keeping a close eye on the news and counting down the days until the H1N1 vaccine is available!

But, the Centers for Disease Control and Prevention (CDC) is doing a great job keeping its web site updated with information, complete with podcasts and YouTube videos. Gotta' love this technology - the CDC will even text message you updates if you're in to that sort of thing.

Whether you're looking for tips for keeping kids flu-free (I'll let you in on a secret - good ol' handwashing is still one of the best ways!); the differences between a cold and the flu; or if you should cancel that trip to Disney World, the CDC has got you covered.

And if you're worried about whether your sniffling, sneezing little guy needs to see a doctor, take comfort in knowing that most people with flu-like symptoms will recover without ever needing to see a physician. In fact, unless symptoms are serious, it's probably best to avoid crowded doctor's offices and hospitals where contagious patients are seeking care. Find out exactly when and where you should seek care for flu-like symptoms.

It's a germy world out there, but we're learning more about these viruses every day. Get smart and stay healthy!

Let's talk tennis

Serena's un-ladylike outburst at last weekend's U.S. Open made headlines, but I'd like to think 17-year-old Melanie Oudin's Cinderella story will linger longer in people's memories.

Maybe I suffer from Pollyanna syndrome (at least it's not the flu!), but I like to see hardworking athletes with good attitudes succeed. (My husband still contends the foot fault call was a joke.)

If you run with the cockeyed optimist crowd like I do, you'll be excited to learn more about the Children Helping Children Junior Singles Tennis Tournament this October 2 - 4. Kids ages 8 - 18 are invited to grab their rackets and pass the hat to raise money for the Center for Cancer and Blood Disorders Center at Children's.

For 19 years, Pam and Ken Sumrow have helped organize this fund-raising tourney in honor of their son, who at age 5, was diagnosed with Ewing's sarcoma. Doctors at Children's found a cure for Clint's cancer, and as a way to say thanks, the Sumrows gathered their family and friends to play tennis and pay it forward. Today, their handsome and healthy son teaches tennis lessons - pretty neat how the world works sometimes, isn't it?

Nearly 20 years later, the Sumrows still get choked up when they reminisce about their family's experience.



If you've got a little tennis pro in-the-making living at your house or if you want to sponsor an athlete at this year's tournament, check out the web site and learn how to get involved. An online auction, which also raises money for the hospital, is already open and taking bids. And let's hear it for all the athletes out there who inspire goodness in others and create their own fairytale endings.

A sweet celebration

Hannah Collie's fifth birthday was a miracle in more ways than one. Many times during Hannah's hospital stay she was teetering between life and death. Not only did Hannah pull through to celebrate her special day, but she also met the mom of her heart donor, who also was turning one year older.

Hannah was diagnosed at birth with Hypoplastic Left Heart Syndrome - the entire left side didn't work. In 2007, she was placed on the heart transplant list. Just days later, Jalen Taylor, the same age as Hannah, died from shaken baby syndrome, and his mom, Shirlonda, donated his organs. Dr. Kristine Guleserian implanted Jalen's heart in Hannah's chest. Hannah recently experienced rejection along with bleeding in her intestines and lungs and spent 59 days in the hospital fighting for her life.

But Hannah couldn't have had a more perfect ending to her stay.

"It's unbelievable," said Amanda, Hannah's mom. "Hannah's here, and she's here because of Shirlonda and Jalen and God."

And Shirlonda said seeing Jalen live through Hannah and feeling his heart beat in her chest was an amazing birthday gift.

Watch Hannah's birthday party where she meets Shirlonda for the first time:

For the Naidus, Children's is the 'family business'

For the Naidu family of Irving, Children’s is “the family business.”

All four Naidus work at Children’s. Dad Krishnamurthy (Kris), mom Euphraisrani (Rani), and their sons Pradeep (Freddy) and Sandeep try every day to make life better for children through their jobs here.

“We’re all proud to be here,” Kris says. “We’re always telling friends and patients about Children’s. We say this is the best place for children.”

Building on their convictions, Rani and Kris have recruited a number of nurses and other employees to work at Children’s. And, of course, they’ve recruited their sons.

Kris and Rani came to Children’s six years ago; he as a health unit coordinator and she as a nurse. They both work the same night shift hours so their schedules are in synch. She works on a floor that cares for children with endocrine disorders, cystic fibrosis and epilepsy; he’s on the renal care unit.

Sandeep, Freddy’s younger brother, works on the cardiac care floor as a health unit coordinator. He’s studying to become a CT technologist. “I plan to stay at Children’s,” he says. “I love kids.”

Freddy, who’s an administration assistant, is pursuing a master’s in business administration and master’s in health administration and sees his future in a management position at Children’s.

For information on joining the Naidus at Children’s, go to http://www.childrens.com/Careers/.

Are you tough enough?

I'm always inspired by my colleagues who work at Children's because of their personal experience at the hospital. In a way, it seems tough to work in a place that is a constant reminder of your child's health problems. Then again, even without a personal story attached to Children's, I still feel good at the end of the day to know I'm working for such a noble cause. So, I suppose I shouldn't be surprised that someone who owes his beautiful little girl's life to the hospital would find satisfaction in a full-time gig here.

Paul Akeman, who works for the Office of Development, wrote a really touching explanation of why Children's is such a special place for his family and why they're getting "TX Tough" for Children's Medical Center.

My wife, Angie, and I are the proud parents of 4-year-old Avery Grace Akeman. Avery has had to grow up a little faster than most.

Avery was born just a few weeks early and spent a brief time in the Neonatal Intensive Care Unit before coming home. Nine days later, however, we returned to Children’s Medical Center with Avery for some tests. Everyone was under the impression that Avery had a case of the “preemies,” and would outgrow her spells.

To date, Avery has spent a total of 372 days in the hospital.

By the time she was 3, Avery had finally begun taking food by mouth, though she still endures eight hours of intravenous nutrition every night and must use a G-tube (a tube that is located on her tummy) to provide supplemental nutrients and medication. She has undergone countless blood transfusions, iron infusions, tests and surgeries.

Thanks to Children’s Medical Center and our great God, Avery is here with us today. To see Avery fully clothed, you would never know the pain that she has endured. She has a great outlook on life and is an understanding, patient, kind-hearted child. The sun in her world is a little brighter, the sky is a little bluer, and the leaves on the trees a little greener.

TX Tough, a series of running, biking and swimming events that raise money exclusively for Children’s, inspired us to form “Team Avery” with a few friends and family members. None of us is a super cyclist, swimmer or runner, but we all share a passion for Children’s and managed to raise just more than $9,000 last year for the hospital.

I choose to participate in TX Tough because it allows me to share my passion for helping children like my Avery, and engage and educate others about the amazing things that happen at Children’s Medical Center each day. I also am grateful to work at Children’s — a place that always strives to provide my daughter with exactly what she needs. I am grateful for such an outstanding organization, TX Tough, to exist and provide a way for me to give back.

So, on that note, are you ready to grab your tennies, or pump up your bike tires, or don a Speedo? Ok, so you don't have to wear a Speedo! But, join us. The next event is a leaisurely bike ride for riders of all ages and all skill levels on Sunday, September 20. Learn more about TX Tough and how to participate, even if your child is well. Heck, because your child is well.

Are you tough enough?

Indian medical mystery

When a 13-year-old girl in India named Twinkle Dwivedi began bleeding “spontaneously” from her head, eyes, hands and feet, the National Geographic Channel decided to make a documentary about this medical mystery.

And, when Nat Geo wanted an American expert to help document the case, they called upon our own Dr. George Buchanan, a blood and cancer specialist at Children’s Medical Center Dallas with more than 40 years of experience and an international reputation for diagnosing medical conditions. Dr. Buchanan is the chief of hematology-oncology at Children’s and a professor of Pediatrics at UT Southwestern Medical Center.

At National Geographic’s request, Dr. Buchanan traveled to Mumbai, India, to work with local physician experts to see if modern medical techniques and close observation could help diagnose Twinkle’s condition, one Dr. Buchanan had never seen before.

What he saw when he got to meet Twinkle was a sweet teen-ager who did appear to bleed from her scalp, eyes, hands and feet; however, what gave Dr. Buchanan and his Indian colleagues pause was that neither he nor they ever saw the start of the bleeding, leaving them unable to either confirm or deny the claims.

Dr. Buchanan believes the mystery will not be solved until Twinkle is observed 24 hours a day, 7 days a week in a controlled setting where the start of her bleeding can be seen.

See for yourself whether you believe Twinkle spontaneously bleeds. The Nat Geo documentary, “The Girl Who Cries Blood,” premieres on Sunday, Sept. 13, at 8 p.m. local time on the National Geographic Channel. Dr. Buchanan will be featured in an interview Thursday, Sept. 10, on NBC Channel 5 during the station’s 10 p.m. newscast on the subject of Twinkle and will be interviewed on the NBC “Today Show” on Friday, Sept. 11. Check our video to see what Dr. Buchanan has to say about the case.

Life with a new heart

Last week I introduced you to Paola Ruiz. She was hours away from getting a new heart. I'm happy to report this superstar only spent one day in the intensive care unit before being transferred to the Cardiology floor, and she will be on her way home tomorrow.

Paola's progress is absolutely amazing, especially since her transplant was trickier than most. She was diagnosed with dextrocardia, meaning her heart has complex plumbing. Drs. Joseph Forbess and Kristine Guleserian performed her transplant opposite of a typical one.

Thanks to the heart team, her transplant was seamless and Paola's heart beats perfectly in her chest. But before going home and starting her new life, this soon-to-be teenager and her parents must be prepared for a new regimen. To prevent rejection and infection, Paola will take 10 medications twice each day and will come to Children's twice a week to see Dr. Aliessa Barnes. The family studied hard for a very important test on medications, symptoms of rejection and her immunity.

And they passed the test with flying colors. Now Paola can focus on all the plans she has for her life.

Watch Paola learn about her test and walk to the playroom just three days after her transplant: