Our patients’ stories: The other side of the drape

The following blog was written by a doctor whose son was recently treated at Boston Children’s Hospital for appendicitis. In it she discusses what it was like to experience a medical emergency and describes the level of care he received at Children’s. It originally appeared on her personal blog, Notes of an Anesthesioboist, and was mentioned on Paul Levy’s blog, Not Running a Hospital.

But this is more than just a nice story; it’s a reminder that the true heart of Boston Children’s is our patients and their families. Do you have a Boston Children’s story you’d like to share with your fellow Boston Children’s parents? If so, please let us know in the comments section bellow or on our Facebook page.

My son had been having episodes of pain right around his belly button for several weeks. Between these bouts of mild abdominal pain he was completely fine—healthy appetite, active, happy. But I had a feeling something was brewing. The disease finally declared itself: several nights ago his belly pain was severe and unremitting. He was in tears. He couldn’t sleep. The pain had shifted a little bit to the right. Sometimes walking made it worse, and when I examined his abdomen, pressing on the area and abruptly letting go increased the pain. I suspected appendicitis, so we headed to our local hospital.

“Where would you rate your pain on a scale of 1 to 10?” asked the Emergency Department (ED) nurse once we arrived.

“Um…6.5,” my son answered. His dad and I had to chuckle. This ultra-mathematically-precise answer was so in keeping with his personality.

Some community hospitals evaluate and treat children for appendicitis, but many refer patients directly to Boston Children’s Hospital, which is what ours did. When I heard we were going to Children’s I was glad; it’s a terrific hospital, with complex, well-oiled systems that include quality health care delivery, and family and child supports.

My son and I walked into Children’s just after midnight. It should have felt like home turf in a way—I had learned to anesthetize children here—but that night it felt utterly foreign.

We were led straight into an exam room. A pediatric resident came to interview and examine my son, doing the same physical exam I had done at home. The pediatric emergency medicine fellow came to see him as well, and repeated the questions and the exam.

At 3:15 a.m. we went up to get an ultrasound of his abdomen. The radiology fellow seemed to be the serious, soft-spoken type, focused, with a cerebral air and a gentle manner. I watched as he scanned my son’s belly, right kidney, left kidney, bladder and mid-abdomen. He pressed hard several times on a spot just to the right of my son’s navel, and each time my son would wince or say “ow.”

After surgery at Boston Children's

After 45 minutes the fellow said he was 90 percent sure it was appendicitis, but it was hard to see the tip of the appendix so he was going to recommend a Computed Tomography (CT) to confirm. I respected the self-effacing and careful way he made my son’s well-being a priority.

The ED nurse wheeled my son back to the exam room to await the next step. When we arrived he thanked her for transporting him. With a look of amazement she turned to me and said, “Who has such nice manners at four in the morning with belly pain?”

While we waited another hour or so for a final decision, my son admitted, “Mommy, I’m worried about surgery.” I reassured him there was nothing to worry about: we were in one of the best hospitals for children in the country, perhaps in the world, and I trusted the surgeons and anesthesiologists there to take good care of him.

What reassured him most, however, was actually meeting his surgeon, a man who will be on my love-forever list for making my son feel instantly comfortable and for saving his life. Appendectomies are fairly routine surgeries; it’s one of the most bread-and-butter operations performed, and many hospitals do several a week. But because they are so common, we sometimes forget that these operations literally save patients’ lives. Without them, patients risk dying.

Or, as my consent form read, “Alternatives: none.”

Our surgeon didn’t want to wait around for further tests. He agreed with me. Everything pointed to appendicitis. He was going to bring my son to the operating room (OR) now.

We were transferred up to the OR holding area where my son changed at last into a hospital gown. His belly pain had been waxing and waning all night, but now the pain was constant. “Now that we’re taking it out, it’s making its last stand,” he said good-humoredly through his pain. To my delight, the pediatric anesthesia fellow on-call that night was a friend and former colleague of mine. What’s more, the anesthesia resident on-call was someone from the program that had trained me years earlier. I knew these two and their attending anesthesiologist would take very good care of my son.

And now came the hardest part: waiting. It was six in the morning and I had been up all night, but I could only doze off for about twenty minutes. I wandered aimlessly through the parents’ lounge. I watched the slice of sky between buildings outside the window change from black, to grey, to light blue as dawn broke over the city. Over an hour later the liaison called into the operating room for an update, and the appendix still hadn’t been taken out of my son’s body. I found that a little worrisome. Another colleague who was working in a nearby intensive care unit stopped by to visit me after his morning rounds. Facebook friends were sending volumes of good wishes. I felt incredibly uplifted and supported, but every clock tick was like something poking me to remind me that all was not yet well. It was like waiting for a plane to land and fearing that something might still happen.

Finally, after about two and a half hours, the surgeon came out to tell me they were done and my son was in recovery. The appendix had not perforated but it had been large and gangrenous, one of the nastiest he had seen in years. They had had to widen the umbilical incision in order to get it out. He showed me a photo. (Shared here with my son’s permission):

That’s when it hit me. Without this physician, and the other members of the surgery and anesthesia and nursing teams, or if we had been dealing with this 150 years ago, my son could have died, or at best, gotten very, very ill. It’s a chilling and humbling thought.

Up on the floor my husband and I got a tour. The unit was clearly designed to be as family-friendly as possible, and every time we walked by his doorway my son would give us a sweet, wan smile from his sick bed.

We watched “A Bug’s Life” and “The Princess Bride” while my son had some Jell-o and mac-n-cheese. I had to go home for the night to rest for my 24-hour call shift the next day, but my husband stayed with our son overnight and was able to take him home the next morning. Before I left for the night my son thanked me for bringing him to the hospital. I am grateful for his sweetness, and for the wonderful individuals who saw us through his first major ordeal. We owe them all a debt that I can only repay by trying to be for my patients what they were for us.

2 thoughts on “Our patients’ stories: The other side of the drape

  1. I was amazed that everyone from our daughter’s world class heart surgeon to the cafeteria staff were so pleasant and accommodating! We ran into her heart surgeon in the hallway on his way to the cafeteria and he actually took the time to stop and ask us how we were doing! We were so amazed and blessed to have such an amazing doctor! Dr. Francis Fynn-Thompson was her heart surgeon:)

  2. Patrick Gagnon’s story: It’s truly hard to believe 15 years ago today I was on an operating table. A scared 4 year old undergoing a life changing event. 15 years ago and Doctor Michael Scott saved my life. Today reminds me of the hardest time of my life and what I’ve gone through to get here. It’s a war that never ends, a fire that’s never tame and a heart that never forgot. But I’m here. I’m still here, 15 years of life I didn’t have to have, and all the strength that has come from pushing forward in a world that saw me as incompetent. But remember one thing, today and always, I am a survivor.
    He had a pilocyticastrocytoma at age 4.

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