Author Archives: Brady.Gervais

Noelle’s story: Overcoming a food allergy scare, one year later

 

Ask Noelle Dilley for her favorite song, and she’ll tell you it’s “The Climb.” It’s a song about struggle and overcoming. About never giving up in the face of adversity.

Noelle knows an uphill battle. A year ago, she experienced her own when she suffered a major allergic reaction and walked the line between life and death.

She was at a church picnic when the 11-year-old licked the frosting of a safe-looking cupcake. But it contained peanut butter – the one ingredient she can’t have. She’s severely allergic. Just one lick landed Noelle at Children’s Hospitals and Clinics of Minnesota where she spent 31 harrowing days fighting for her life. She ultimately recovered, thanks to the excellent care she received, a community of staff, friends and family who never left her side and the power of prayer.

“She is a miracle,” said her mom, Renae Zaeska.

Noelle went into cardiac arrest and CPR was performed. Her heart started pumping again, but her lungs were so inflamed and full of mucous that she was unable to use them. During her first night, her lungs moved less air than a premature baby’s would. She was ultimately put on ECMO (extracorporeal membrane oxygenation), a technique that provides cardiac and lung support to patients whose heart and lungs are severely distressed.

She underwent surgery, endured numerous procedures including a bronchoscopy and was tested time and time again as she recovered.

But, recover she did. After a month in the hospital, she went home, where she continued physical, occupational and speech therapy. Within months, Noelle was playing basketball again.

While she continues to go to therapy for neurological damage – she has short-term memory loss – she is almost 100 percent recovered.

“She progressed so fast,” said her dad, Dewy Zaeska.

Noelle returned home to a school and community that have taken several measures to help her avoid another allergic reaction.  She eats at a peanut-free table and has her own computer at school. Her classroom is wiped down every day. Her school has also implemented a grab-and-go plan should the unthinkable happen.

Earlier this month, the president signed a bill that offers a financial incentive to states if schools stockpile epinephrine, considered the first-line treatment those with severe allergies.

Noelle’s parents have taken measures of their own. Last year, they avoided family gatherings during the holidays, unwilling to take any risks around food. They seldom go to restaurants. Noelle also takes Xolair, a treatment to reduce the sensitivity to allergens, every two weeks.

Though Noelle may seem back to normal, her family will never recover from the scare.

 “They told us you will probably never get over this, and I see why,” Dewy said.

When Renae has a bad day, she goes home and immediately hugs her daughter.

Noelle created a photo journal from her hospitalization to help understand what happened to her. While she was sedated most of the time at Children’s, she remembers aspects, some more vividly than others. She worked closely with a music therapist while she regained strength and would like to become a music therapist one day.

The family continues to make the 90-minute trek to Children’s for follow-up care. Every time, they want to thank Noelle’s team of doctors.

“How we feel about that whole system…it’s out of this world,” Renae said. “It’s an A+ team.”

Read the original story we published last year about Noelle.

Noelle is just one of the many brave kids that Children’s is proud to care for each year, and we couldn’t do it without your support. Your donation helps us provide Minnesota’s kids with some of the best medical care in the world. From surgeries big and small, to cancer care, to innovative pain management techniques, nobody treats kids like we do. Thank you for your support today, and helping kids just like Noelle.

Five Question Friday: Shannon Swanson

Meet Shannon Swanson, a nurse on our neurosurgery team.

How long have you worked at Children’s? I’ve worked at Children’s for over 12 years.

What’s a typical day like for you? My typical day is, well, I don’t really have a typical day because we see so many different types of patients and surgeries, and I hold several different roles on our unit.  Some days I’m the team lead or charge nurse and some days I’m in the office handling the neurosurgery resource lead duties, and some days I’m in the OR as a circulating nurse.

Still, there are some predictable patterns to the types of surgeries that I deal with. We arrive at work and attend morning report at 7 a.m. From there, I go to the room I’m assigned and start looking at my surgical cases for the day, taking note of any special equipment/transport or provider needs.

The first case of the day usually is scheduled between 7:30 and 8 a.m. As a team we get the room ready and all the supplies needed for our case. I review my patient chart and join the anesthesia team out by the patient’s room to do our safety checks and we all (patient, family member, anesthetist) walk back to the OR together.

From that point on, it is a continuous flow of assessment and technical skill to meet the health care needs of my patient. As OR nurses we are constantly managing the flow of the room and the care of the patient so that everything happens in a safe, effective manner. We are not only responsible for patient assessment but legal documentation, as well.  We must make sure all surgical policies and procedures are carried out to Children’s standard. After the case is over we are responsible for transferring care to our PACU nursing staff.

On a typical day, I might have anywhere from one to 10 cases depending on the length of time each surgery takes.  It would be impossible to write out all that we have to accomplish with each specific and unique case. It can be a fast paced environment where things change all the time. Working in neurosurgery, you must be prepared, you have to be ready for anything, but you also need to maintain a sense of calmness. 

Why did you become a nurse? I went into nursing because my grandmother told me she thought I would make a good nurse. It’s as simple as that. I was very close to my grandmother and respected her a great deal.

What do you love most about neurosurgery? What I love most is the challenge that each of the cases brings to the table. It is awesome to work with the latest and greatest technology and the best surgeons in the field. The cases are hard but rewarding, and it is that rewarding feeling knowing you are helping a family that keeps you coming back when you have a particularly hard case. Neurosurgery is a physically and emotionally taxing specialty, but overall it’s an extremely rewarding career. I can’t imagine doing anything else. 

How do you spend your time outside of work? I have a very active family life! I have two children. My oldest just left for college this past fall, and my daughter is a sophomore in high school. I love to exercise, travel and read. My favorite past times are biking, doing yoga and spending time with my family and friends trying new restaurants!

Traveling with kids during the holidays

Molly Martyn, MD

Molly Martyn, MD

With the holiday season coming, many families are making plans to travel to see family and friends.  Airline travel with infants and young children can be both joyful and stressful.  Travel is often unpredictable, but advance preparation can go a long way when it comes to traveling as a family.

The Travel Security Administration (TSA) and Federal Aviation Administration (FAA) both have tips on their websites for safe airline travel with children.  Below are some ideas and information to help your trip go more smoothly.

Planning and packing

1.  Many families find it helpful to use a checklist for packing, something you can use for the next time you travel.  Keep a pencil and piece of paper nearby while you go through your daily routine with your child and make notes of things that you will need to remember to pack.  In general, the less gear you have to tote around the better, but having an extra pacifier or a favorite comfort object with you will help make life easier for everyone.

2.  For older children, talk with them in the week prior to your trip about what they can expect at the airport and the new things they will get to explore and experience with a trip to the airport, an airplane ride, and at their destination.

3.   Check with your airline ahead of time regarding checking car seats and strollers.  If you bring a car seat or booster seat, they can often be checked as an extra piece of luggage without additional fees.  Most airlines will allow you to check a stroller at the gate, which is helpful because it means you can use your stroller to go through security and navigate the airport.

4.  Pack more food in your carry-on bag than you think you will need in case your travel is delayed or you find yourself waiting on a runway.  If you are traveling with an infant who drinks formula, bring extra.  If you are traveling with young children, pack plenty of nutritious, filling, familiar snacks that do not need to be refrigerated.

5.  Baby formula, breast milk, and jarred baby foods are allowed through security, but must be presented to a TSA officer.  Pack them separately from your other liquids or aerosols.  You can read more on the TSA website.

6.  Bundle diapers, wipes, a changing mat, and a few plastic bags together so that they are easy to access for diaper changes.  Pack extra clothes in your carry-on.  Footed pajamas are a good option because it is only one item of clothing to change in case of an accident, spit-up, etc.

Safety tips

1.  Children less than 2 years of age can legally travel in a parent or guardian’s lap, which is what most families opt for given the cost savings.  The American Academy of Pediatrics recommends that children travel in their own airplane seat, restrained in a car seat appropriate for their size and age.  A car seat that can be used in an airplane will carry a label stating that it is certified for use in both motor vehicles and airplanes.  Once children are 40 pounds, they can use the aircraft seatbelt.  Unlike in cars, booster seats are not routinely used for airline travel.

You can find out more information on the FAA’s website.

2.  Babies and small children can be carried through TSA screening (strollers and car seats have to go through the XRay machine).  TSA should not ask travelers to do anything that will separate them from their children.

3.  Have a plan with older children about what they would do in case you get separated while traveling (a place to meet, who they can safely ask for help, etc).

In the air

1.  Changes in altitude during take-off and landing can cause uncomfortable pressure and fullness in ears.  You can help keep infants comfortable by having them nurse or suck on a bottle (this mimics what older children and adults learn to do to “pop” their ears by yawning or chewing on gum).

2.  To occupy older children, pack a bag of “special treats” such as books/crayons/games to be used on the plane.

3.  Look forward to a safe arrival at your final destination!

Good luck and travel safely.  If you want to read more, here are some good sites and additional tips:

Recipe: Perfect pot roast

Nothing says comfort food like a perfectly tender pot roast with a pile of mashed potatoes. It’s a staple in my fall/winter cooking repertoire, and once you’ve tried it, I’m convinced it’ll become a regular meal at your house too. Browning the beef is what develops the wonderfully rich, deep flavors in this recipe, so be sure not to rush this process. I like to braise the roast with a mix of carrot, celery, leeks, fennel and rutabaga, but feel free to use whatever combination of veggies you’d like. — Andrew Zimmern

Photograph by Madeleine Hill

Ingredient List
• 3 to 4 pounds beef chuck roast
• 2 cups flour
• Bouquet garni of fresh thyme, rosemary, bay leaf and parsley
• 4 tablespoons olive oil
• 5 garlic cloves, peeled
• 1 cup tomato puree
• 1 teaspoon black peppercorns
• 4 cups beef stock
• 3 yellow onions, sliced
• 2 tablespoons butter
• 3 medium carrots, peeled and chopped
• 1 medium leek, white and light green part diced
• 2 ribs celery, diced
• 1/2 cup fennel, chopped
• 2/3 cup rutabaga, chopped

Instructions
Servings: 6
Total Time: About 4 hours
Preheat the oven to 300 degrees.
Heat a large oven-proof roasting pan over medium heat on the stove. Add the olive oil.

Season the beef with salt and ground black pepper. Place the flour in a large plastic bag. Dredge the roast in the bag of flour, shaking it free of any excess flour. Discard any extra flour.

Brown the beef in the oil, about 5 minutes per side. Remove meat from pan and set aside.

Add the onions, garlic and bouquet garnish of herbs to the roasting pan, cooking and stirring until nicely colored to a light brown, about 10 minutes.

Add stock and tomato. Bring to a boil and cook for 5 minutes. Add the meat back to the pan. The top of the roast should ‘crown’ out of the braising liquid.

Place a 5-inch square of foil on top of the exposed meat.

Place roasting pan in a 300-degree oven, covered for 3 hours.

Meanwhile, place the butter in a large sauté pan over high heat. When foaming, add the carrot, fennel, leek, celery and rutabaga and sauté for 5 minutes. Season with salt and pepper.

After the meat has been cooking for 2 hours, add the vegetables to the roasting pan.

Test the pot roast for tenderness after the last hour of cooking; a fork should turn easily in the roast (you may need to cook longer than 3 hours depending on the size of your roast).

Place the roasting pan on stove top. With a slotted spoon, reserve the meat and vegetables to a serving bowl. Bring the liquids to a simmer and reduce by about half. Pour the reduced liquids over the meat and vegetables and serve.

Five Question Friday: Jesse Stremcha

Give to the Max Day — Minnesota’s day of generosity — is just around the corner on Nov. 14. So, there’s no better time to interview Jesse Stremcha, who’s played a huge role in leading our online giving efforts, than now.

What is a typical day like for you at Children’s? Busy!  Lot’s of emails, lots of meetings, lots of work all trying to get the community excited about investing in Children’s success and the health of Minnesota kids.

What fires you up most and brings you back to Children’s, day after day? We have a great mission.  I know every day I get to work with smart, driven people to support that mission.  That…and…a good workout and a great cup of coffee in the morning.

Why is philanthropy important? I think we all have an urge to help others.  Philanthropy is one important mechanism for doing that.  I love this quote from Jimmy Buffett, “Some of it’s magic, some of it’s tragic, but I’ve good life all the while.”  I feel really lucky to do the work I do and have the opportunities I have and I make sure I can help others have “some of the magic.”  I give to organizations that make that happen in ways I can’t alone.

You’re helping support our Give to the Max Day efforts. Why should people support Children’s on GTMD? Give to the Max Day is an awe-inspiring day of generosity: More than 53,000 donors giving over $16.3 million to more than 4,300 nonprofits IN ONE DAY. WOW! I think people should give just to be part of something so amazing and so special to Minnesota.

If that’s still not enough, there’s great reasons to support Children’s:

1.  We do lots of stuff — Child Life, Sibling Play, Pet Therapy, Music Therapy and on and on– that makes Children’s a special place for kids.  Donors pay for that.

2.  We don’t turn kids away. One in three kids we see needs financial assistance of some kind.

3.  We provide some of the best care in the world in some of the best facilities in the world because donors invest in great health for kids.

We know you’re huge into biking. Where is your favorite place to go for a ride? I’m no good at favorites. I love to ride lots of different places. I think every trail and ride has a charm of its own. My ‘bread and butter’ ride is the River Road loop between the Ford and Franklin bridges. I also consider Lebanon Hills my “home” mountain bike trail, but I love Murphy-Hanrahan and Cayuna Lakes, too. I’ve recently discovered gravel riding and love to cruise the back roads around my hometown of Northfield, Minn.

Trevor Eder-Zdechlik to ‘Lead the Team’ at Vikings game

Just a month ago, 14-year-old Trevor Eder-Zdechlik was diagnosed with chronic myelogenous leukemia (CML). It’s a cancer of the bone marrow and blood. While it’s rare for kids to have CML, there are some effective oral chemotherapy options available, and his treatment plan is already underway, his parents said. The hope is that Trevor responds well and can avoid future procedures such as a bone marrow transplant.

“The reality is that there is no cure, and he’ll likely have to remain on these drugs for the rest of his life. Trevor’s positive attitude about beating CML is an inspiration to all of us,” his parents said.

Trevor plays football, basketball and baseball. When he’s not playing sports, he’s watching them. He is also an honor student.

We welcome Trevor and his family as he leads the Vikings onto the field before their match-up Thursday evening against the Washington Redskins.

Photo challenge: Color your support for Children’s for Give to the Max Day!

 

Color your support for Children’s for Give to the Max Day (Nov. 14) — the Great Minnesota Give Together — starting Nov. 7. Upload a photo corresponding with each day’s chosen color to Facebook, Twitter or Instagram and use the hashtag #childrensmngtmd. We will use all submitted photos to create a mosaic to be revealed on Give to the Max Day. In addition, we’ll randomly draw a different participant each day to win a poster of the mosaic.

 

You can also support Children’s by donating on Give to the Max Day! Like to plan ahead? Donations can be scheduled prior to Nov. 14.

Recap: MRI-guided laser ablates Gavin’s tumor

Even superheroes don’t always win the first round in a fight.

But, 7-year-old Gavin Pierson came out ahead this week. Gavin, who has a brain tumor that he nicknamed Joe Bully, underwent Visualase MRI-guided laser surgery on Oct. 29. He is the first person in the country with a mature teratoma to have the surgery.

Nothing has come easy for Gavin, who has endured five craniotomies, chemotherapy and countless drugs since his diagnosis a year and a half ago. That included the MRI-guided laser surgery, in which it took two attempts before his tumor could be ablated. But, Gavin had an army on his side. Led by Dr. Joseph Petronio, a team of neurosurgeons, radiologists, nurses and our partners set out to fight Joe Bully.

Here’s a synopsis of how Joe Bully went down:

At approximately 8:09 a.m., Gavin was transported to the OR for sedation.

Bone-in fiducials were placed at approximately 8:46 a.m. A fiducial is an object placed in the field of view of an imaging system and appears in the image produced to provide a point of reference.

Gavin was taken to CT for scans at about 9:05 a.m. and returned to the OR around 9:30 a.m.

With the help of Dr. Richard Patterson, Dr. Petronio began mapping out a plan for placing small flexible laser probes to the intended target area – the tumor.

Around 10:26 a.m., Dr. Petronio created two burr holes before placing the probes.

About 30 minutes later, Dr. Petronio removed Gavin’s shunt, which was unrelated to the Visualase procedure.

Gavin was taken around 11:18 a.m. to MRI for additional scans. The MRI allows the physician to precisely monitor treatment using special Visualase software.

However, Gavin’s tumor deflected the probes. Ablation was halted.

The probes were removed, and skin fiducials were placed to for additional scans.

Gavin’s determined team took him back to the OR, where Dr. Petronio mapped out a new plan and entry point for another probe.

At approximately 3:39 p.m., Gavin was wheeled back to MRI.

About 45 minutes later, the team started ablation, in which laser light heated and destroyed the target area. Temperature maps showed the team the extent of the tissue being destroyed.

Pow! A significant portion of the tumor – an area that Dr. Petronio was unable to reach during craniotomies – was incinerated! Equally significant was the way the lesion responded to Visualase. Because of the type of tumor and its biology (relatively low blood perfusion), the laser distributed the heat extensively and the thermal distribution corresponded nicely to the shape of the tumor and the tumor/normal brain interface, Dr. Petronio said.

“To me, this represents perhaps the most significant development in Gavin’s case, in that we found, perhaps for the first time, that ‘Joe Bully’ has a weak spot, or an Achilles’ heel,” Petronio said. “I’m really encouraged about what we will be able to do with future ablations.”

By 3 p.m. on Oct. 30, Gavin was on his way home – less than 24 hours after surgery.

If you haven’t been following Gavin’s story, catch up here.

Recipe: Spaghetti squash crumble

If you’re looking for an alternative to mashed potatoes or roasted veggies, you gotta try this spaghetti squash crumble. It’s the ultimate, sweet-and-savory fall side dish that just screams comfort food. The yellow winter squash is also low in calories and packed with nutrients, such as beta-carotene and fiber. — Andrew Zimmern

Photo by Madeleine Hill

Ingredients

Squash filling

  • 2 medium sized spaghetti squash
  • 1/3 cup minced parsley
  • 1 tablespoon fresh thyme leaves
  • 1 stick butter
  • 1 pinch ground nutmeg
  • 1/4 teaspoon ground cinnamon
  • Pinch ground allspice
  • Pinch ground ginger
  • 1/4 cup minced shallots
  • 3 minced garlic cloves
  • 1 cup diced tomato, drained

Crumble topping

  • 2 cups fresh bread crumbs
  • 1 stick salted butter, melted
  • 2/3 cup ground Pecorino Romano
  • 1/4 cup brown sugar
  • 1/3 cup thinly sliced almonds, lightly toasted

Instructions

Servings: 8 to 10
Total Time: 2 hrs 45 min

Preheat the oven to 325 degrees.

Halve the spaghetti squash and remove the seeds. Place on a large shallow baking dish or sheet pan, and season with salt and pepper. Roast the squash, flesh side up, for 90 minutes.

After the squash are cool enough to handle, scrape the flesh into a large mixing bowl with a fork.

Sauté the shallots and garlic in 2 tablespoon of the butter until translucent, about 5 minutes. Stir that mixture into the spaghetti squash.

Melt the remaining 6 tablespoons of butter, and pour into the squash. Then, add all the herbs, spices and tomato. Fold together. Season with salt and pepper and reserve.

In a separate mixing bowl combine one stick of melted butter, the bread crumbs, cheese, almonds and the brown sugar.

Place the squash mixture in a large oval or rectangular baking dish and sprinkle the ‘crumble’ over the top.

Cover loosely in aluminum foil and bake for 25 minutes at 325 degrees.

Remove the foil and raise the temperature to 425 degrees. Cook until ‘crumble’ is crispy, roughly an additional 25 minutes.