An Update on My Teen's Spontaneous Pneumothorax (Spontaneous Lung Collapse)

Five weeks ago, I didn't know what a Spontaneous Pneumothorax was, let alone how to pronounce it. Today, the disorder has become part of our everyday conversations, especially with doctors, teachers, family, and friends. Nevertheless, we are in the home stretch. After Monday of next week, we will only need to focus on one thing: Lewie's full recovery.

After Lewie's hospital stay, we needed to visit Yale twice more. The first visit was a checkup. Lewie's surgeon examined the site of the chest tube incision and let us know it was healing well. He told us Lewie's pain would last 3 to 6 weeks, but the healing itself would take 6 months or more. The good news was that he was safe to resume physical activity as soon as he felt better.  

Eating at one of our favorite restaurants after Lewie's first checkup.For both hospital visits,
hubby and I decided to take Lewie together--there's no one more important than him.

The second visit, which took place this past Thursday, was to check his heart. At first, I thought it was a mistake. Aren't they supposed to check his lungs? The doctors explained that sometimes spontaneous lung collapse is associated with a disorder called Marfan Syndrome. If Lewie had it, he could potentially have other life-threatening concerns primarily related to his heart. They did an ultrasound and then questioned us about Lewie's health. In the end, while he did have some characteristics of Marfan Syndrome (scoliosis/flat feet), he didn't have the other telltale signs such as poor vision, joint pain, disproportionately long arms, legs, and fingers, or heart problems. The ultrasound concluded that Lewie's heart is healthy--whew! (Fun fact: Some geneticists and historians think President Abraham Lincoln may have had Marfan Syndrome, but it's hard to know since the disorder wasn't named or characterized until 30 years after Lincoln's assassination.)

Lewie celebrating his last hospital visit with some warm chocolate lava cake.

During the latter part of May (May 20th, to be exact), the focus was on Lewie returning to school. Would he do half days or full days? Would he have to complete missed assignments or have them excused? Would he have to take finals? I had hoped the poor kid wouldn't have to worry about finals. After all, the last lessons he had in school were before his April vacation. The outcome was mixed--on the one hand, Lewie would be excused from any tests, assignments, or projects he missed. On the other hand, he would still be expected to take finals and advocate for himself when he encountered test questions on material that wasn't familiar. Some of his teachers were wonderful as they provided tests with questions crossed out. Other teachers expected him to "try" the whole test even when he hadn't learned the material. "Neurotic mom" came out and ended up advocating for him. We're still waiting to see final test results as we speak with some being fair and others that were, in my mind, unfair and needed adjusting. 

Since returning home, Lewie's general routine has changed as well. He couldn't play tennis, go on walks, or bounce on our trampoline. Even riding in a car was difficult for him as he complained that his left side hurt every time we went over a small bump. (For this reason, my mom and I took turns bringing him back and forth to school since the bus ride was too much.) 

Lewie was sad about missing tennis, especially spending time with the new friends he made on the team. He wanted to stay after school a few times to watch them play, but his pain got the best of him. During those first few weeks of returning to school, he would be holding his side and utterly exhausted by the end of the day. It was so hard to watch him like this when, only a short month earlier, he seemed to be the healthiest kid we knew!

This week, I think, might be our turning point. Lewie is finally feeling less pain and in much better spirits. He only has two more finals to go (this Monday). He was able to spend some time with his friends outside of school, and on Wednesday, he was invited to attend the banquet for the men's and women's tennis teams. Everyone had a good laugh when his coach made a comparison chart between the men and women. He included "Collapsed Lung" as a category, and of course, the men earned a checkmark over the women. Lewie was so happy to be invited to the banquet, even though he had to sit out for the last half of the season. He laughed at the joke right along with everyone else, which may have provided the closure and healing he needed.

As I sit here right now, I am ready to begin a new chapter. Lewie's freshmen year of high school had both good and bad moments. The positive is that he made lots of friends and got involved in two activities I never expected--skiing and tennis. The challenging parts were getting through tough classes like Spanish, Biology, and Geometry, which only became harder after his spontaneous lung collapse. After Monday, we don't have to look back. Lewie will be able to spend the summer giving his body the rest it needs, and we can start planning some fun, long-awaited activities with family and friends. I can hardly wait!