Public School, Major Surgery, and Careful Planning

Swallow, My Sunshine: Teeter TotterWe knew about our daughter Sammi’s impending major cardiac surgery five months in advance. That gave us plenty of time to research, plan, discuss, and codify our plan for her recovery as it related to school. Not everyone is lucky enough to have this much time to prepare, and so I hope the information below can be helpful to someone else trying to put together a plan on shorter notice. Even if you have enough time to prepare, this checklist can help you ensure that you’ve thought of all the things that might affect your child’s recovery when s/he returns to school.

504 Plan

The very first step we took when preparing for our daughter’s surgery was to inquire with the school district about getting a 504 Plan. Shorthand for “Section 504 of the Rehabilitation Act of 1973,” a 504 Plan makes official any accommodations a child needs in order to participate in normal classroom activities. In the state of Illinois, where we live, the board of education has provided an excellent, comprehensive article about how to apply Section 504 to shorter-term, temporary conditions (though the law also applies to longer-term and permanent disabilities). Creating a 504 Plan forces the school to work with you to accommodate your child’s health needs in a way that gives them the best possible access to their classroom and school activities.

Because we had been through the process of developing a 504 Plan before to accommodate Sammi’s food restrictions, this was relatively straightforward for us, but we also knew the importance of getting the information we put into writing in this plan into the hands of every teacher who would encounter our daughter in the course of her school day. In the end, we decided together with the school to have a meeting that included her classroom teacher, the district health coordinator, the school health clerk, the school social worker, and the school principal, as well as my husband and I. It gave us the opportunity to explain the surgery in detail to the whole team in person, allow them to ask questions, and to brainstorm accommodations together.

Schoolwork

Sammi was going to be missing, at minimum, three weeks of school. Though she was only in third grade at the time, we wanted to be sure that she didn’t fall so far behind in foundational subjects like math that she couldn’t easily catch up. We also knew that complications could occur that would keep her out of school longer than we anticipated, and so we wanted to be prepared for that.

Once again, being aware of the law in our home state was useful. In Illinois, if a student’s doctor determines that the student must be out of school for at least ten days, the district can be reimbursed by the state for providing tutoring services either at home or in the hospital. We were able to get our daughter’s surgeon to sign paperwork affirming that projected missed school before the surgery, and therefore we were also able to have the district find and hire a tutor in advance. Having the extra notice beforehand even allowed them to look for a tutor who spoke Spanish, since Sammi was enrolled in a Spanish immersion classroom.

Safety

We expected Sammi to return to school with two large incisions healing on her back, one across each shoulder blade. Under those incisions, scar tissue between her ribs would be healing slowly. She would not be allowed to carry a backpack, reach her arms up above her head, or move very quickly. Being jostled hard would likely be very painful, as even deep breaths would feel different to her with both sides of her ribs healing. In short: there would be many opportunities during the course of a normal school day for her to get hurt.

Working with the school health clerk, the principal, and her teacher, we began by developing a plan for the beginning and end of the day. In the morning, Sammi would arrive at school just before the bell rang that gathered students from the playground to line up near the door, and instead of waiting outside, would bring a friend to sit in the school office with her until the halls cleared. The reverse would happen at the end of the day, avoiding crowded hallways. During the school day, movements between classes would occur with friends flanking her on either side.

Activity Restriction

Sammi would not be allowed to return fully to her normal activities for at least six weeks after the surgery. That meant there would be no Physical Education class and no outdoor recess. The school’s initial suggestion that she simply sit on the sidelines for those activities was not an acceptable solution for us; we didn’t want her spending an hour a day watching her friends have fun while she sat and watched. Instead, we came up with a list of alternatives and a schedule for her to follow:

  • Reading to the kindergarten class
  • Helping tidy and organize the art classroom (the art teacher was a favorite)
  • Playing math and literacy games in the library
  • Helping me when I volunteered in the school bookstore

Each day, she picked a different classmate to join her during these twice-daily activity times.

Emotional Support

We knew that Sammi would feel overwhelmed, sad, angry, or simply frustrated at times. We also knew that her classmates — who had been together as an insular group for four years — would have questions, worries, and big feelings of their own before and after she returned to school. Including several emotional support components in the 504 Plan helped us set these expectations early on.

The first day of school following her surgery, the district health coordinator and the school social worker visited her classroom and told the students there about what had happened. In simple terms, they explained the surgery and told the students that she was doing well. They worked with the class to make cards and offered any students who needed it the opportunity to process the information privately with the social worker. Just before Sammi returned to school, they met with the class again to discuss her restrictions, how she’d likely feel, and to let the students ask more questions.

The social worker also checked in with Sammi several times once she returned to school and left her with an open invitation to visit her anytime.

Peace of Mind

In the end, though the highest priority for us was to keep Sammi safe, it was also important for us to feel proactive about the time after her surgery. There was nothing we could do for her during the surgery, and little we could do for her in the hospital. Once she was home, we would have to prepare her for her return to school, and we wanted to know that we could give her answers confidently about what it would be like for her there. That was very valuable for us in the months we spent preparing.

If you need help developing a 504 Plan for your child, here are some resources:

 

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Not Her Heart

heartWe entered the children’s hospital on a dark December evening. We didn’t bring a child.

Up the escalator to the lobby, to the registration desk for our badges, we made our way through the mazes of floors and elevators until we reached a place that looked like nothing we’d ever seen before: a carpeted hallway, two small couches, and an empty coffee table outside a closed door with no window.

We were not visiting the doctor in an examining room, we learned. There would be no paper-covered table, no swiveling chair, no cheerful posters. We were visiting the doctor in his office itself.

The door swung open, and he shook our hands. “I remember you guys,” he said, smiling. “It’s nice to see you again.” Continue Reading…

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A Test She Couldn’t Fail

glowheartWhen I was pregnant with my younger daughter, Sammi, I worked in an aging office suite with a highly-coveted tiny kitchenette. Other departments of the same non-profit had to go to the basement to retrieve and reheat their lunches, but our little corner of the building had a full-size refrigerator and a microwave.

That microwave must have been older than I was. In the years before having children, I often warmed my cold fingers in front of it as heat leaked out the seams in the door. Once I was pregnant, I wouldn’t even pass by the cubby where it rested if I knew someone was using it; I was afraid the radiation was seeping out with the heat, and I didn’t want to put my unborn child at risk of cancer before she was even born.

Then she was diagnosed with a rare congenital heart condition at the age of 13 months, and in addition to the chest x-ray she’d already had, she had to be put under general anesthesia so that her surgeon could get a clear picture of her vascular anatomy via computed tomography — also known as a CT scan. An IV allowed the flow of a contrast solution into her veins and arteries so that they would all light up in the scans. I sent her in — all sixteen pounds of her — and tried not to think about how much radiation she was absorbing. They needed those pictures. It was the only way to get them. Continue Reading…

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I Am Not a Fool, and Other Thoughts

hosesAfter ten endoscopies, a year of restricted diets, nearly six years of medication to block acid production in her stomach, diagnosis with an inflammatory disorder called eosinophilic esophagitis, and dozens of trips to gastroenterologists, my eight-year-old daughter slid under an x-ray machine, drank some barium, and lit up the screen with a reveal of her esophagus, kinked into utterly unnatural shapes. After the radiologist told me in a hushed voice that the indentations in her esophagus were coming from her aorta, snaking its way across the back of her body, I began to put all the pieces together on my own.

The esophagus is like a rubber hose stretched between two funnels —  mouth on one end and stomach on the other. For Sammi, on one side of that hose —  about a third of the way from the top — a firmer hose was pressing into it from the side, trying to make its way across. That was her aorta, arching down the right side of her body instead of the left, where most people’s aortic arch lives, because of a surgery she’d had to correct a double aortic arch as a baby. It partially succeeded in crossing, but when it met with too much resistance, it snaked down further and tried again, forcing Sammi’s esophagus to follow its path until that esophagus was shaped not like a long straight rubber tube but like a lightning bolt. Continue Reading…

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Holding Things

insideSammiBetween 2010 and 2013, between the ages of four and eight, my daughter Sammi had ten endoscopies. Each time, she fasted from dinner the night before until after her morning procedure. Each time, they held a gas mask over her face in the operating room until she fell asleep, and then, after escorting me out of the room, they inserted an IV with heavier anesthesia and fluids, took a blood sample, inserted a mouthpiece and fed a camera down into her esophagus. They took pictures and they took biopsies — tiny pieces of her esophagus to test for the presence of eosinophils, the white blood cells whose functions, according to Cincinnati Children’s Hospital, include

movement to inflamed areas, trapping substances, killing cells, antiparasitic and bactericidal activity, participating in immediate allergic reactions, and modulating inflammatory responses. 

Ten times. They did that to her ten times in just over three years. They did that because she was still experiencing the symptoms of GERD — also known as “reflux” — past the age that a child would normally outgrow it. We took her to a major children’s hospital gastroenterology practice, a practice in the same hospital that had corrected her cardiac issue when she was a baby. Keeping everything in the same hospital made sense to us, at the time. All the records would be together, we thought. There would be less repeating ourselves, far fewer requirements of us to remember dates and test results — all the information would be stored with her chart.

We believed in the power of information sharing among professionals, which was a mistake. Continue Reading…

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