July 15, 2014

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The Center for Children and Women is now dispensing eyeglasses. The addition of this service brings comprehensive optometry care to patients. After completing an eye exam, patients who need eyeglasses can immediately select from the many stylish frames that are available for children of all ages. This new service allows The Center’s patients to have all their optometry needs taken care of without leaving the building.

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In addition, The Center’s onsite optometrist makes it easy for Texas Children’s Health Plan members to keep up with eye exams. “I’m so proud to be a part of the Center and the value it provides the community,” says Dr. Brook Komar, The Center optometrist. “And now, in addition to their medical care, the patients can get all their eye care needs met in the same place. This is exciting.”

On May 20, all eyes were on Noel as staff members celebrated the first child receiving glasses at The Center for Children and Women. When Noel’s mom was asked what she thought of the experience, she said, “The process was very easy, and I am happy that The Center is so close to my home. Everyone has been so nice; they have taken good care of us.”

For more about information about The Center for Children and Women, visit JoinTheCenter.org.

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With the national and local demand for Acute Care Pediatric Nurse Practitioners, Texas Children’s and Texas Tech University have entered into a partnership agreement that supports faculty roles for APRNs, Priscila Reid MS, RN, FNP, CPNP-AC and Julie Kuzin, MSN RN CPNP-PC/AC. Students will enter the program this fall and will benefit from the expertise of these two APRNs that are dedicated to patients and families at Texas Children’s through advancing nursing education and training.

AC-PNPs practice in a variety of settings not only in the hospital’s intensive care and subspecialty units, they extend their practice to the community in caring for the technology dependent child and the chronically ill child with special needs. Historically, the hospital has relied on an abundance of residents to staff the 24/7 units. The shortage of residents and the mandate to reduce resident work hours from the Accreditation Council for Graduate Medical Education (ACGME) has led many hospitals to rely on acute care nurse practitioner to provide quality patient care. With the shift in the model of using more acute care PNPs, the need for education and training has increased.

The partnership between Texas Tech University Health Science Center and Texas Children’s Hospital allows for Reid and Kuzin to have a paid faculty position with the university while still spending half of their time in the patient care setting at the hospital. We believe that this partnership will strengthen the recruitment of AC-PNPs at Texas Children’s.

“We are positioning Texas Children’s to step into the 21st Century to make a difference in patient outcomes by ‘advancing nursing practice through advanced practice nursing,” said Elizabeth “Charley” Elliott, director of advanced practice providers.
The courses will officially begin in the fall.

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In our high-tech world, communication should be quick, easy and convenient – and there’s no exception when it comes to accessing your child’s medical records.

Texas Children’s recently improved online patient portal called MyChart provides secure access to your child’s lab results, medications, allergies, immunizations and other pertinent health information. If you need to request a doctor’s appointment, renew prescriptions or email questions to your child’s health care provider, you can do it with a simple click of the mouse.

“When we implemented MyChart in 2010, one of our goals was to enable parents to become active participants in their child’s health care,” said Julie McGuire, assistant director, Enterprise Systems Clinical, at Texas Children’s. “We want to continue to create a positive experience for our patients and their families, while delivering the highest level of care possible.”

MyChart is a free service offered to patients at Texas Children’s Pediatrics, Texas Children’s Hospital and Texas Children’s Pavilion for Women. Several recent enhancements were made to improve the site:

  • Online history questionnaires – This form is available on MyChart a week before your child’s appointment. Filling it out early will allow physicians to review your child’s medical history a few days before the scheduled visit.
  • Health summary downloads –Your child’s health information can be downloaded from MyChart onto a portable CD or USB drive.
  • Improved online after-visit summary – You will receive an email notification when the after-visit summary report is available on your child’s MyChart account.

“MyChart’s email capabilities help physicians and staff respond more efficiently to a child’s medical needs by providing direct communication between the parent and their child’s health care provider,” said Dr. Joan Shook, chief safety officer and director of Emergency Medicine services at Texas Children’s. “Our digital data storage system helps us preserve patients’ health information for convenient retrieval thereby reducing the potential risk of damage or misplacement.”

Patient safety, efficiency and positive patient experience are what MyChart is all about. If you haven’t signed up, the enrollment process is simple and takes only a few minutes to complete.

Click here to learn more about MyChart.

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Texas Children’s Fetal Center staff has taken a closer look at fetal imaging, conducting three separate studies which evaluate the effectiveness and importance of diagnostic tools such as Fetal MRIs for identifying and treating CDH (congenital diaphragmatic hernia), EA (esophageal atresia) and MBA (mainstream bronchial atresia). The three studies were published in the Journal of Pediatric Surgery and confirm the significance of high quality imaging in the perinatal management of different congenital anomalies.

“These three studies show the importance of a correct and precise prenatal diagnosis using high technology and a multidisciplinary team of experts,” said Dr. Rodrigo Ruano, co-director of Texas Children’s Fetal Center and one of the authors on all three studies. “It is incredible that using fetal MRI, it is possible not only to determine if the fetus will survive or die, will need ECMO or not, but also if the fetus will have pulmonary morbidity and respiratory complications related to the congenital diaphragmatic hernia after birth in the NICU.”

In addition to identifying benefits of prenatal imaging, Ruano explains that a multidisciplinary approach – like the one that is used at Texas Children’s Fetal Center – also was shown to have significant benefits. For example, with the combination between excellent quality of prenatal imaging (ultrasound and MRI) and multidisciplinary expertise, one study showed that it was possible to identify prenatally the esophageal atresia in more than 80 percent of cases.

“We have fantastic opportunities to improve capabilities with the help of our imaging colleagues and following that all the way to the NICU and long term outcomes,” said Dr. Oluyinka Olutoye, co-director of the Texas Children’s Fetal Center and another co-author of the studies.

According to Olutoye, the studies will help fetal surgeons to better refine their ability to counsel patients, largely due to better predictors of outcomes.

“Our studies showed fascinating data that we now can predict with excellent accuracy the type of lung lesion (MBA instead of congenital adenomatoid malformation) as well as predicting respiratory morbidity related to CDH using fetal MRI and multidisciplinary evaluation,” said Ruano.

Ruano cites the improvement of quality in fetal imaging as one of the key improvements of fetal medicine over the past few years.

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Texas Children’s Hospital hosted a two-day training workshop on June 25-26 for the PumpKIN clinical trial protocol attended by cardiovascular surgeons and cardiologists from medical centers throughout the United States.

Texas Children’s Hospital is one of 22 hospitals selected as a clinical site in an NHLBI trial of new technology for children, infants and neonates with severe heart failure who need mechanical circulatory support. This study, PumpKIN (Pumps for Kids, Infants, Neonates), will randomize candidates to one of two types of advanced heart support devices as a bridge to transplant – the infant Jarvik 2000 system or the FDA-approved Berlin Heart Pediatric EXCOR® ventricular assist device (VAD).

Tim Baldwin, PhD, NHLBI project officer for contract research on pediatric ventricular devices, discussed the protocol, study design and trial eligibility for this five-year study. Dr. Robert Jarvik, designer and biomedical engineer of the first artificial heart used as a permanent implant in a human being, spoke on the development of the Jarvik 2000 device and noted the critical need for devices manufactured specially for children. The cardiovascular surgeons and cardiologists also participated in lab training.

“A critical need exists for long-term mechanical circulatory support for children with severe heart failure, many of whom die while waiting for a heart transplant. This clinical trial will hopefully give us another option in pediatric circulatory support devices so that we can continue to make progress in treating these sick children,” said Dr. Charles D. Fraser, Texas Children’s surgeon-in-chief.

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By Eden McCleskey

Greetings all! Since I haven’t posted in a while, I’ll share a quick update. My first child, Jess, is 18 months old and doing great. His little sister, Austen Elizabeth, is 4 months old. Yep, I had another one already! Getting pregnant the second time happened FAST, but it all worked out. She arrived one day past her due date – healthy and beautiful at 8 lbs. 10 ounces and 22.25 inches long. Since we’ve been blessed with a boy and a girl, we feel like our family is complete, and now I can focus on raising these babies and getting back to normal.

For me and millions of other moms out there, that means heading back to work. It’s an intensely personal and variable experience for everyone – and it’s impossible to predict how you will feel about it until it happens. Here’s a few tips to help ease the transition back to work, which helped me a lot.

1) Focus on the benefits of going back to work
Most people work because they need and/or want money. Earning a paycheck is the trade-off for not being able to do whatever we want 100% of the time. So, don’t be shy; show yourself the money. Log in to your bank account, 403(b), cash balance pension and social security. Google a retirement savings calculator and imagine how much money you will have when you retire at 65. Total up your current financial commitments and think about how you’d pay them without your paycheck. Don’t forget about other benefits like health, dental, etc. Imagine what your life would be like 20 years from now if you never went back to work. What kind of savings would you have? What kind of house, car, vacation or college would you be able to afford?

EdenskiddosThink about your current job, coworkers and whether you like them. If you quit your job now, even if it’s just for one year while the baby is young, it’s unlikely that you will get it back. You will eventually find a job somewhere, but there is no guarantee it will pay as well or provide the type of environment that you want. The longer you’re out of the job market, the harder it will be to get a commensurate position.

2) Weigh the pros and cons of being a stay-at-home parent
As a child/teenager, I assumed that I’d eventually become a stay-at-home mom and I’d make spectacular dinners and crafts, and Martha Stewart herself would envy my home. What was I thinking?!?! I don’t like house cleaning. I have the urge to cook a fancy dinner about once a year. Even though I love my children with every ounce of my being, I don’t want to be with them all day, every day. By the end of a weekend (especially a long weekend), I’m exhausted and depleted. It’s haaaaard. Yes, I know I had mine very close together and they’re still very young. It probably will get easier as they get older. But, then again, it might get easier in some ways and harder in others. If I stayed home with them all day, there would be more fights, more power struggles and more TV, no doubt. No one can be a “Fully Engaged Parent” ALL. THE. TIME. The dynamics of my marriage would change. I would be needier of my husband’s time, help and conversation. Also, I would probably have tunnel vision on my kids and struggle with my identity outside of them.

Besides, I really like daycare and so do my kids! At 3 months old, I could tell my babies were bored hanging around the house all day. They like being around people. While I could get a nanny for the same price I’m paying to put two kids in daycare, we still prefer daycare. Jess is more social, empathetic and patient than some kids his age who aren’t in daycare. I realize there are amazing benefits to being a stay-at-home mom too, and I’m not putting that down by any means. But it makes me feel better about being a working mom to realize that staying at home isn’t necessarily the one-and-only “gold standard.” Both arrangements have pros and cons; it’s just a matter of what works best for your family.

eden23) Be happy with your child care arrangements
It is impossible to go back to work if you don’t feel comfortable about where you are leaving your child. Research child care options. Use trusted, first person recommendations, yelp reviews and this site. Think about the vibe you get from the teachers, the facility and the administration. If you’re choosing a nanny, have detailed conversations with their references (meet the families in person, if possible), or go through a service (like The Motherhood Center) that does background checks and extensive vetting.

Do not “make do” with something that feels “OK.” If you found a place that is awesome, convenient and right in your price range, but you are on the wait list, don’t despair. You will eventually get in, but in the meantime, you need to find somewhere that feels just as good. It might be a little further or pricier or it might not have the playground or facilities you want. As long as their care is top-notch, sign up and move to your ideal place when the spot opens up.

4) Establish a routine
Life works better with a system. In my family, my husband usually drops off the kids in the morning and I pick them up in the afternoon. We follow the same bedtime routine every night, which starts at 6:30 p.m. and ends at 7 p.m., with both kids asleep.

I used to be fairly lax about chores, but with two kids, that just does not fly. Every night, the kitchen, family and play rooms are cleaned and everything the kids will need for the next day is washed and ready to go. Even if (like me) you’re not a naturally ordered and routined person, you’ll need to become one eventually to keep yourself and your family sane. Do yourself a favor and establish a routine early. It can always be tweaked as necessary.

5) Communicate (A LOT)
When you reflect on the enormous parental responsibilities of raising a tiny infant from “scratch” all the way to adulthood, it can be overwhelming. Even if you are an amazing parent or part of an amazing parent team, you’ll somehow feel guilty and alone much of the time and second guess your choices. Don’t bottle it up! Communicate with your partner – all the time – about everything. Clear up any budding mutual resentments. Talk about how amazing your kid is. Talk about the Baby Center article you just read. Talk about other parents you know and what you think they’re doing wrong and doing right. It’s not just an interesting, “adult” form of gossip (that can help long car rides fly by in a jiff), it also helps you form an identity as a parenting unit and make decisions about how you want to handle certain things before you actually get there.

Talk to your friends, family and coworkers, too. Most parents love talking about being parents, whether their kids are itty bitty or long grown. In the old days, it took a village to raise a child. Today’s “village” is more virtual (friends, family, books, internet) than “hands on,” but talking with them and using their advice is helpful and makes you feel much less alone and afraid of messing up.

 

July 8, 2014

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Two year-old Zoey Klein ran around the hallways of the congressional offices chasing after Congressman Pete Olson while her older brother, four year-old Will, chuckled at the playful race. The two were blissfully unaware of the importance of this moment in their lives or the fact that the man who played around in the hallways with them is a member of the House of Representatives representing the 22nd District of Texas. Olson is one of several policymakers the children met during their family’s week-long visit to Washington, D.C.

Get a behind-the-scenes look at the trip to Capitol Hill

Zoey and Will are the children of Texas Children’s Hospital Neonatologist Dr. Jennifer Arnold and her husband, Bill Klein who are also the stars of TLC’s The Little Couple. The family visited D.C. along with representatives from Texas Children’s Hospital and patient families from hospitals across the nation to advocate for better health care for medically complex children. The collaborative effort is part of the annual Family Advocacy Day organized by the Children’s Hospital Association to bring awareness to children’s health care needs by bringing patients to The Hill to meet with representatives and senators and speak about important issues.

“It made me realize that the opportunity to be face to face with our politicians is very powerful,” said Arnold. “I felt that regardless of their political views and party lines, they really do want to listen to the people they represent. I also found it was very important not to hold a bias for any politician. Regardless of my views or theirs, children’s health care affects us all and it takes the support of all our legislators to improve it.”

This year was perhaps the most important in the history of the event as the families were asking their representatives to support a new bill which would affect kids with medical complexities. The week before the patient families arrived in D.C., a bipartisan group of representatives introduced H.R.4930, the ACE Kids Act, which stands for Advancing Care for Exceptional Kids. Congressman Joe Barton and Congresswoman Kathy Castor were the original bill authors with representatives Anna Eshoo, Gene Green and Jaime Herrera Beutler signing on to back the proposed legislation. The legislation is a major step in helping families of children with medical complexities who are forced to find care across state lines. Right now, Medicaid does not cover the expense of the health care services that are received if a child has to travel from Louisiana to Texas for specialized care at Texas Children’s Hospital. The bill would also allow for better coordination of care between hospitals.

“For my kids, it will mean the ability to travel across state lines to get the right specialty care for their medical needs without inefficiencies and poor coordination of care,” said Arnold. “For my patients it will allow me the ability to access medical records, tests, and information from other institutions across state lines and prevent the need to duplicate these in my care.

In a packed meeting room, the representatives who have signed on to support the bill along with the family advocates gathered for a press conference to announce the important new piece of legislation. The bill authors say this coordination of care would save between 13 and 15 billion dollars over a ten year time frame by improving processes and looking at how hospitals coordinate and monitor care.

“The legislation allows states who choose to participate, to modify their Medicaid program and transform it to address the health care needs of the sickest and costliest kids – medically complex patients,” said Texas Children’s Director of Government Relations, Rosie Valadez-McStay. “It will transform Medicaid for this population and improve health outcomes, establish pediatric quality guidelines, and move Medicaid for kids into the 21st century.”

“Models in place like Texas Children’s and others across the country really demonstrate that effective and aggressive care management reduces emergency room use, hospitalization and it really does drive down costs while improving quality,” said Patrick Magoon, President and CEO of Ann and Robert H. Lurie Children’s Hospital of Chicago.

For the 30 families who traveled to The Capitol to speak with their representatives and senators, it was an important moment in history. A chance to make a difference by speaking up for the health care needs of children like themselves, those who require a specialized team to care for their unique needs. Valadez-McStay said the trip is an opportunity for families like the Klein’s to be the voice of all children with medically complex conditions.

“Children don’t choose to be born poor. They don’t choose to be born sick,” said Director of Government Relations Rosie Valadez-McStay. “We need to create a health care system which allows all children to access the best care and this bill is a step in the right direction.”

Congressman Barton urged everyone to speak up because the only way important pieces of legislation move in congress is when voters speak up about why it’s important to them. It’s a chance for health care workers, patient families and anyone who cares for the health of children in our country to step up and join Speak Now for Kids, the grassroots effort which brings attention to this important cause.

“There are 5,000 to 6,000 bills introduced in every congress and less than 500 become law,” said Barton. “This is a bill that has a chance but it won’t go anywhere unless those across the aisle begin to feel that this bill needs to move. You have the ability to contact your congressmen and women to ask them to sign on as co-sponsors.”

As Zoey and Will made their way around The Hill carrying a sign which read, #Speaknowforkids, they may not have known the difference they were going to make, but it was one that may affect children’s health care, and their own, well into the future.

Three ways to join their efforts today:

Call, write, and reach out. Lawmakers are elected by you to stand up for you. Make your voice heard. Contact their offices and let them know why you care about Medicaid reform for medically complex children. Click here to find out who represents you.

Get social with your policymakers. Find the social media pages for your representatives and senators and post messages on their pages about why you want them to support the ACE Kids Act.

#Speaknowforkids. Use this hashtag and saturate social media with your stories about why this bill matters to you, your patients, and your family.