The Worst Diet Yet

emptyplateWhen we brought our daughter Sammi home from her week-long stay in the hospital following cardiac surgery, we had an extra challenge to face. When we planned the surgery, we’d known that once we got her home (if we got her home), she’d need to rest. We’d expected that she’d be tired, that she’d be loopy from the medication. What we hadn’t expected was that she’d be one of the percentage of patients who undergo similar surgeries and end up with a complication called chylothorax.

Chylothorax is a long, ugly word for a leak in a thoracic duct. The thoracic ducts are part of the body’s lymphatic system, located mostly in the chest, and are responsible for — among other things — the processing of about 60% of the body’s dietary fat, which flows through them. Because the thoracic duct is located alongside the aorta, Sammi’s surgeon warned us that they might nick it with an instrument during surgery. “If that happens,” he said, “it usually heals on its own, but she might have to follow a special diet for a while.”

I barely listened. Special diet? I’d done special diets over and over again since Sammi was a baby. A diet would be no big deal. Also: it might not even happen! I did no research on chylothorax before Sammi’s surgery.

And then she had it. In clearing layers of scar tissue from the side of her esophagus, the surgeon had met with a thoracic duct, and the damage was done.

The diet, we learned, was fat-free. It didn’t mean fat-free the way that the weight-loss diets of the 80s meant “fat-free” — many of those foods, we learned, had a gram or two of fat. In a normal person with a functioning thoracic system, that’s close enough to fat-free. In someone with chylothorax, a gram of fat here and there would eventually leak out of her thoracic ducts and fill her chest with a thick, milky substance that had nowhere to go. Eventually, without more surgery, she’d drown from the inside.

Drown in fat. Continue Reading…

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I Went Outside

tree skyWhen my daughter spent six days in the hospital for the cardiac surgery that would change her life, I saw daylight and felt fresh air only for a few moments a day on my way from the garage to the hospital or vice versa. When we went home, we resigned ourselves to staying inside some more.

Sammi was cozied into a corner of the couch that her older sister had lovingly lined with soft blankets and fluffy pillows, but she was itching to move. Unfortunately, doctors’ orders were that she not only sit still, but that as long as she stayed on strong pain medication, she also needed to be accompanied up and down stairs by an adult and watched when she was in the bathroom. She grumbled and sometimes outright cried about this state of affairs. I did neither, but the emotions I’d kept in check in her presence for the last week were beginning to bubble close to the surface. Though I’ve never had trouble staying calm and steady for her, I knew there was a limit to the holding-it-together I had in me. Sooner or later, I needed to get out.

When my husband went back to work, there were still two weeks of at-home healing left for Sammi. One of my close friends had offered to come over one day and sit with Sammi so that I could get out, just for an hour or so. Deciding to take her up on it was hard for me, though I knew all the platitudes about mothers needing to put on their own oxygen masks before helping their children. I needed the break, and I also needed to be watching Sammi at all times for any sign that something — some undefined something — was going wrong.

In the end, I accepted. Continue Reading…

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What to Bring

bagIf you are ever the person I was, packing a car to drive to the hospital for your daughter’s seventeenth time under general anesthesia (this time, to move her aorta away from her esophagus), you will need to bring many things with you. Take notes. I know exactly what you will need, if you are ever the person I was.

First of all, you need clothes for you. You need soft pants and a roomy shirt to sleep in on an uncomfortable set of cushions by the window, cushions whose ill-suitedness for restful sleep you will not notice as you sink, delirious with exhaustion, in and out of a black slumber twenty times a night. You need thick socks and slip-on shoes so that you can perch on the edge of the bed and then jump off quickly to skitter across the room and grab the emesis basin, the phone, the nurse’s call button. You need more hooded sweatshirts than you would have predicted. You will be far colder than one would expect.

You do not need clothes for your daughter. Though you may have thought ahead to the incisions and the need for button-down as opposed to pull-over pajamas, you have somehow forgotten the snaking tubes and lines and leads and wires that would need to be disconnected in order to manage something as complicated as sleeves. She will only need hospital gowns. The pajama bottoms, while a nice touch, are only an impediment to quick bathroom trips, of which there will be many.

Perhaps, just bring her some socks. Continue Reading…

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The Second Time Is Different

Sending a baby into cardiac surgery is hard.

I brought Sammi to the hospital that morning in 2006, and she was wearing fleece pajamas covered in frogs. She was 13 months old and had a light layer of soft duck-fluff hair that stuck to my face when I cried, but she had perhaps a word or two in her vocabulary, neither appropriate for anything approaching real communication. She was beautiful and soft, and she smelled wonderful, and I could trace the shape her body made on my torso as she laid there, but had I lost her that day, far more of what I would lose of her was in the future and amorphous. Our experiences together until then were primal still — nursing and holding, touch and smell, fear and love.

It was all uncertain then: who would she be? what was she like when she was not sick? how would her voice sound when she learned to sing? 

She was a mystery, yet, and grieving a mystery is still grieving, but it’s fuzzy and intangible. I would never know quite what to miss. Continue Reading…

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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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