Tag Archives: Medicine

Out and about: Visiting the Children’s Developmental Center

Open House at the Children's Developmental Center.

As anyone in my office (or my family) will tell you, I spend way too many hours with my eyes glued to my laptop screen. So I appreciate a good excuse to escape the virtual world and drop into the real one.

Last week I said “yes” to an invitation to attend an open house at the newly opened Children’s Developmental Center at Easter Seals Southwest Human Development in Phoenix. This place, despite its big name, is all about little people. Specifically about understanding little people and what makes them tick.

The center is staffed by a team of professionals — in medicine, psychology, physical therapy, speech therapy, occupational therapy and more — who combine their expertise to evaluate children for developmental delays or disabilities and collaborate to recommend interventions.

I stepped off the elevator to a spacious area with cheerful, lemon-colored walls above wooden pegboard paneling. A huge fish tank commanded attention in a waiting area at one end of the room, where pint-sized tables and chairs and a variety of toys welcomed young visitors.

I met people I have read about and admired for years, including Ginger Ward (founder of Southwest Human Development) and Daniel B. Kessler, M.D., a developmental and behavioral pediatrician with a long history at St. Joseph’s Hospital & Medical Center who was recently named medical director of the Children’s Developmental Center. I met Terrence Matteo, Ph.D., a licensed psychologist and director of the Children’s Developmental Center, and had a chance to thank him for an article he wrote for our October magazine on helping babies sleep.

A sign pointed visitors down the hallway to “The playrooms.” The center has four, each of which can be set up in specific ways to help the experts make assessments for issues that may be impeding a child’s physical, intellectual, emotional or social development.

The first playroom was set up to evaluate children for autism. “What do you look for?” I asked.

“We look at the level of development of their play,” Matteo told me. “Are they rigid in their play? Are they using items in a way not intended? Are they banging cars together [instead of "driving" them around the room]? Are they throwing the plates? Are they able to request toys? What’s their level of social communication?” Such sessions are videotaped from a small, dark room behind a one-way glass window so that the multi-disciplinarian team of professionals can work together to make an assessment, and offer recommendations to the parents.

Another playroom was set up for feeding evaluations. Children who are referred to the center for such observation may be exhibiting anything from difficulty swallowing to muscle-related speech impediments. This room also has a one-way mirror behind which several professionals observe parents and their children interact.

Lorenzo Castillo enjoys playing in the room set up as a kitchen. He visited the open house with his grandmother, Veronica Castillo of Phoenix.

The room is set up like a kitchen — with small tables and chairs, toy appliances and a variety of plastic foods scattered about on tabletops and counters. The experts watch to see what happens. Does the child show interest or apathy? Does the child play with the pretend food or avoid touching it? Does the parent engage in play, guiding it with inquisitive comments and gestures, or sit passively and watch? The smallest observations can help the professionals piece together the puzzle to help them understand why some children do not enjoy the process of eating and do not grow and thrive as they should.

Plastic food set out for a feeding assessment. "Children learn to eat through play," Matteo says.

Before they even get to this room, the family has undergone a home visit by one of the center’s professionals so that interactions can be observed in the context of comfortable surroundings.

“With babies and young children, everything is so intertwined — parent, child, society, environment,” Matteo says. “You don’t want to look at the child in isolation.”

This is is a time-intensive, ideal, “best practices” approach to early childhood development assessment and intervention — and it’s not cheap. That’s where Development Director Laura Chasko comes in. It is her job it is to seek grants and donations to support this work.

The center works with families to avoid or minimize out-of-pocket expenses through qualification for primary and secondary insurance reimbursement and DDD, AzEIP, or school district eligibility. Any out-of-pocket expenses are reviewed under a sliding fee scale consideration.

“Our goal is to serve 300 families each year,” Laura told me. Right now, as they work to get the word out, there is not even a waiting list.

Learn more about the center’s approach and scope of services here. And if you are worried about your child’s development or behavior, contact the center at 602-468-3430 or email CDcenter@swhd.org.

Southwest Human Development is Arizona’s largest nonprofit child development agency, providing programs and support for more than 135,000 children ages birth to 5 and their families. In addition to the Children’s Developmental Center, the organization provides programs including the  A.D.A.P.T Shop, the Birth to Five Helpline (which offers free advice 24/7), the Good Fit Counseling Center and more.

Photos by Daniel Friedman

A patient entertainer

Ellington King (10) of Phoenix shows us part of an IV while his child life specialist, Sarah Maurer, watches. Photo by Daniel Friedman.

He’d just had his spleen removed and he was still a bit woozy from the anesthesia. But 10-year-old Ellington King was game when child life specialist Sarah Maurer asked him, and his mom, if we could stop by to visit.

I was at Phoenix Children’s Hospital with RAK staff photographer Dan Friedman,  shadowing Sarah and trying to get a sense of what her life is like now that she is no longer a patient, but a patient advocate. Her story is the first is a series of magazine articles I plan to write in coming months that revisit the stories of children and families we’ve featured in the past. (“Sarah’s Story: 1993, 2008 and today.” is in our September 2011 magazine.)

Sarah was a cancer patient at Phoenix Children’s when she appeared on our cover in 1993. She was a college student when she was featured again in a 25-year-anniversary story we wrote about the hospital in 2008.

And now she is a child life specialist at the hospital that saved her life.

Sarah sat near Ellington’s bed and talked with him just as she would if our entourage, which included two members of the hospital’s public relations office, hadn’t been there.

“Any surprises?” she asked Ellington, referring to his surgery.

“Yeah,” he said. “All of you!” We laughed, eager to hear more from this bright, engaging fifth grader.

Sarah handed him a laminated, handmade flip book, something she and other child life specialists use to prepare children for surgeries. The book shows pictures of the various places and pieces of equipment that are involved. She asked Ellington to describe his experience.

This child needed no props to launch his monologue.

“I’m knocked out, havin’ a great time, sleepin’, dreamin’ about hamburgers and French fries all the time,” he said.

“Because you couldn’t eat anything all day, right?” Sarah prompted.

“Then I wake up, I say, ‘I got my spleen out!’ then I come back here and get knocked out again.” (Meaning he fell back asleep again, tired from the medicine, Sarah explained.)

Being on anesthesia “just reminds me of the ‘forget me’ stick from Megaminds,” he said, and more laughter erupted.

As we looked at the pictures, Ellington showed a clear grasp of all the work Sarah had done to prepare him. As he explained how an IV is used to administer medicine, he looked at Dan. “You might want to get a picture of this,” he said.

Ellington, who told us he’s been in the hospital “hundreds of millions of times,” has a condition called spherocytosis. His mom, Cheerve, told us it affects him much like sickle cell anemia would, though “he is not as severe.” Her son also has asthma.

There was nothing in Ellington’s demeanor that would indicate he was in any discomfort or pain. Still, he told Sarah, “I was just crying here a little while ago, I was hurting so bad.”

“Did you tell someone, so they could give you some medicine for the pain?” she asked.

“Yes,” he said. “They did give me pain medicine, right here, in the IV.”

“What else can you do to help the pain?” she prompted.

“Pray and breathe,” he responded.

Sarah liked both of those suggestions and reminded him that there are things she can bring to help: bubbles to focus his breathing, play-doh or squeezy balls to work out stress.

I asked Ellington if everything he’s learned and all the time he’s spent in the hospital had him thinking about a career in medicine.

“No!”  he said emphatically. “I really just want to be in basketball. But now that my spleen is out, I’m totally playing football. Knocking everybody down.”

“I’m kinda thinking maybe comedy?” I said.

“Oh yes. I’m thinking of being a comedian, too,” Ellington said. “Or an actor. I’m acting right now because I really feel like just passing out.”

Before we left, I asked Cheerve if he’s always like this — or if the pain medications were contributing to the entertainment factor of her son’s comments.

“He’s always like this,” she told me. So if comedy (or acting) is in his future, he’s clearly got what it takes.

What I learned watching open-heart surgery

When I was driving home from St. Joseph’s Hospital & Medical Center last Thursday night, it started to hit me.

As I walked into the kitchen and my husband asked, “How did it go?” I started to tell him. And then I lost it. The significance of what I’d witnessed that day finally sank in. And I couldn’t stop crying.

I’d seen the inside of a woman’s chest: the flesh beneath her skin, her breastbone, her beating heart. I’d seen her life systems overtaken by a machine and tubes of her blood running past me on the floor behind her surgeon. I’d stood inches from her head as I watched two delicate procedures to repair faulty valves in her heart — and as her breastbone was carefully stitched back together with a C-shaped hook and some wire, then fortified by several Titanium plates.

I’d seen two surgeons stand over their patient for six hours straight–no water, no food, no bathroom breaks. Only the rare shrug of shoulders indicated any sign of fatigue.

I’d seen the most intense kind of job-related stress. The pressure on this surgical team, led by Brian deGuzman, M.D., was  crushing. For several hours, their patient was, in effect, dead. There were so many times, so many places where something could have gone wrong. And yet there was never a sense of tension in the operating room, never a sharp word, never an expression of frustration that made anyone else feel uncomfortable.

I’d seen that people who have the highest expectations and standards of care can accomplish miracles. And crack jokes doing it. That a surgeon can hold someone’s life in his hands while humming along to a country western radio station.

I’d seen the purest form of teamwork, when two surgeons, an anesthesiologist, a perfusionist and three nurses were so singularly focused on a good outcome for their patient that the execution of their respective tasks looked like a beautiful and meticulously choreographed dance.

I worry about a lot of things involved in running my business and sometimes even allow myself an indulgent moment of self-pity when times are tough. But at the end of the day, no one dies if I make a mistake or have a bad day.

So I learned something watching open-heart surgery. I saw standards I should strive to emulate, patience I should try to find, focus that surpasses personal comfort, purpose that transcends nerves or fear and confidence that emanates from careful preparation — and a team of people who have your back.

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In the doctors' lounge with Christina Lovato, M.D., the surgical resident who assistant cardiac surgeon Brian deGuzman during the surgery I watched.

I can’t begin to express my gratitude to Brian deGuzman, M.D., his staff, his surgical team (including anesthesiologist George Gellert, M.D., perfusionist Barry Steinbock and surgical resident Chrstina Lovato, M.D.) and all of the other wonderful people at St. Joseph’s Hospital & Medical Center who made this opportunity possible for me, looked after me, explained things to me and gave me an amazing experience I will remember for the rest of my life.

What it was like to watch open-heart surgery (Part 4)

I guess I watch too many medical shows on TV. But I was expecting something a little more dramatic.

When cardiac surgeon Brian deGuzman, M.D. finished repairing two damaged valves during an open heart surgery I watched at St. Joseph’s Hospital & Medical Center last week it was time to give the repaired heart a test drive. The intricate network of cannulae (tubes) that had been set up to detour the patient’s blood away from the heart during surgery were reconfigured and perfusionist Barry Steinbock gradually sent warm, freshly oxygenated blood back into the heart, which had been in a state of suspended animation throughout the delicate repairs. (To give you an idea just how precise his movements must be, deGuzman at one point told me, “One stitch too deep and she’s on a pacemaker.”)

I was expecting paddles, someone calling, “Clear!” and an electrical shock to restart the heart.

Instead, as I was waiting around for that dramatic moment, the 60-year-old woman’s warming heart quietly welcomed the resurgent lifeblood. Almost imperceptibly, anticlimactically, it slowly started beating.

“Hey!” I said to Steinbock in disbelief. “Her heart is beating!”

Though his mouth was hidden by a surgical mask, I could tell from his eyes that he was smiling indulgently. “That’s usually what happens,” he said. “It usually starts beating again on its own.”

Proving once again that the quiet miracles are the most profound.

What it was like to watch open-heart surgery (Part 2)

Anesthesiologist George Gellert, M.D. describes the pressures of cardiac surgery like this: “It’s like you’re a pilot flying an airplane into a tunnel — a very dark tunnel. You can’t see a thing but you just keep going, hoping the tunnel is straight.”

He told me this as I stood in his area of the operating room at St. Joseph’s Hospital & Medical Center during a six-hour, open-heart, double valve-repair surgery performed last Thursday by Brian deGuzman, M.D., associate chief of cardiovascular surgery at the hospital’s Heart & Lung Institute.

The patient was stable, the surgery was proceeding as planned and, at least for the time being, Gellert was watching and waiting.

So he invited me to join him in his space, a tiny cave created from walls of technical equipment encircling the patient’s head. He explained the role of the cardiac anesthesiologist, whose job it is to put the patient to sleep, block pain and paralyze the muscles of the body so the patient doesn’t move during highly precise procedures required of the surgical team. He drew pictures on my notebook to help me understand exactly what deGuzman was doing to repair this particular damaged heart. He showed me all the monitoring equipment he must watch during surgery — and what the red, blue, green and turquoise lines told him about how well the patient was tolerating the procedure.

He also showed me the monitor for a new echocardiography system that captures 3D images of the heart. St. Joseph’s was the first Arizona hospital to use the groundbreaking Siemens technology in open heart surgery. It uses ultrasound to measure the height, width, depth and motion of the heart to collect multiple two-dimensional images which, in seconds, can create a three-dimensional image on a computer screen, allowing surgeons to view the heart’s function and flow velocity through a clear, 3D image.

Gellert is an expert at interpreting this imagery; several times during the surgery deGuzman conferred with him to discuss a particular aspect of this heart’s unique anatomical features before taking his next steps.

At one point, Gellert allowed me to stand on a small stepstool by the top of the patient’s head, where I could peek over an angled curtain shield and peer into the open cavity of her chest, watching the intricate repairs deGuzman was making to the first of two faulty valves he would repair that day. I stood transfixed for more than an hour, not even flinching when a forceful spray of blood shot out suddenly, leaving both deGuzman and surgical resident Christina Lovato, M.D., covered with bright red spatters.

It wasn’t until I looked straight down, on my side of the curtain, that I started to feel weak. The soft white curls of the patient’s hair were just inches away. I could see patches attached to her smooth forehead like big white, green-dotted band-aids. (The patches, Gellert explained, held monitors in place to track the patient’s brain activity.) I could see that this woman, not so very much older than I am, had beautiful skin. And a peacefulness about her eyes. It made me think about her family waiting anxiously in a lounge not far away. For a few, concentrated moments, I focused my thoughts on this woman, this wife, this mother. You are in wonderful hands. Your surgeon is extremely skilled. I wish you could see how gently, how reverently, he holds your heart. All of these extraordinary people are watching out for you. You will be okay.

Every once in awhile, deGuzman would say something and Gellert would reach past me to make some sort of adjustment to his equipment. It all seemed very routine; I knew, of course, it was anything but that.

No matter how well prepared the medical team, no matter how many tests are done beforehand, unexpected things can happen in surgery.  So the surgeon relies on the skills of the team of people around him, whose job it is to keep the patient stable and help anticipate any problems.

Because the tunnel isn’t always straight.

Preparing for surgery

Before I left for Ethiopia last summer, I spent three days visiting my sons in Washington, D.C. While they were at work each day I spent quiet time alone, reading, writing, walking and thinking. It was a wonderful opportunity for me to settle my thoughts and prepare myself for the experiences to come.

Tomorrow I will be in a hospital operating room all day, watching a skilled surgeon perform open-heart surgery. It’s an opportunity few non-medical people will ever have and I am not taking it for granted. I want to be fully present, undistracted by my workday life, prepared to absorb and learn.

This time I went to the mountain preserve at sunset, seeking emotional and spiritual preparation. As I trudged around a gentle, circular trail, listening to the frantic yipping of coyotes on a nearby slope, I tried to quiet my mind so I would be ready for yet a new adventure.