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!

A Mother's Day to Treasure (Now that My Son is Home from the Hospital)

Where do I begin? I thought my next blog post was going to be about Costa Rica. (We went from April 14 - April 21.)  The trip, which included activities like hiking, snorkeling, rafting, bike riding, and ziplining, was fun but exhausting, and each of us (including my fifteen-year-old son) arrived home feeling like we had just run a marathon. Our flight arrived in Hartford early Monday morning, so I told Lewie he could use the day to sleep in instead of going to school. (I still had to go to work.)

We all arrived home a little banged up. I had a few minor bruises from rafting, Lew's knees were swollen (he had to use a wheelchair at the airport), and Lewie had an injury from bike riding (he took a header) and felt sore from ziplining. On Monday, Lewie's arms, back, and shoulders continued to hurt, and he said he felt some type of 'pop' in his chest.

As the week progressed, Lewie's soreness was getting worse instead of better. By Wednesday night, he said his chest hurt, and it was hard to breathe. Being the great parents we are, we told Lewie to stop exaggerating. "Lewie, you probably pulled a muscle," I told him repeatedly. "Doctors can't do anything for pulled muscles." My husband, too, kidded him--"Toughen up, fluffy!" Surely, my husband had a right to tease him as he was hobbling around on crutches with not one but two bum knees.

My mom was the voice of reason. "I think he should get checked out." It was decided that Lewie would go to school on Thursday, but instead of going to tennis practice in the afternoon, my mom would drive him to the walk-in. There, they could take a chest x-ray if needed. 

On Thursday afternoon, time stopped. It's as if our normal life was paused and a dramatic movie took over. It started with my mom's phone call at work. "Annette, it's Mom. I'm here at the walk-in clinic with Lewie, and the doctor wants to talk to you."

Before I could respond, a sweet, angelic voice took over the phone. "Hello, are you Lewie's mom? We just finished taking an x-ray of Lewie's chest, and he has a collapsed lung. There's no need to panic as I have a smiling kid looking at me who otherwise appears normal, but we need to rush him to the emergency now. Do I have your verbal permission to send him to Yale Children's Hospital?"

"Of course," I said in shock. There was some confusion about whether the ambulance would actually take him to Yale because the drivers were typically instructed to take him to the nearest hospital; unfortunately, the closest hospital didn't have the capacity to deal with a collapsed lung. I called Daddy Lew in the meantime and asked him to rush over to the clinic.

The next phone call came in while I sprinted to my car to leave work. "The ambulance is taking him," my husband blurted, "I'm driving there now. I'll keep you posted."

The next 48 hours were a blur. Upon his arrival at Yale, Lewie's medical team had to puncture a hole between his ribs to insert a chest tube. (My husband, who was allowed to stay in the room during the procedure, nearly fainted as blood was spurting everywhere.) When one incision didn't work, they made a new one. Lewie received a dose of Ketamine to be used as a short-acting anesthetic, but it gave him bad hallucinations, and he remembered waking up out of the hallucination only to see his blood everywhere. "Two bodies, one brain, two bodies, one brain," Lewie said over and over again while waking from one of his hallucinations.

When the procedure was over, there was a sigh of relief. His lung had filled itself back up with air--hooray! The doctors kept taking x-rays and monitoring him only to explain that Lewie wasn't in the clear yet. "We need to perform another surgery. His lung is losing air, and if we send him home right now, he'll be back again in the same situation."

I can't say exactly what they did. It sounded like they needed to scrape the lung to create scar tissue so it would attach itself to his chest cavity. It wasn't until after the procedure that the doctors and nurses said this surgery was a particularly painful one. My mom and I were there when he woke up from his anesthesia. When he first woke up, he seemed almost like normal Lewie, but within twenty minutes, he became violently ill. The poor kid was miserable--an intravenous in one arm, a chest tube in his side, and a sensitive stomach that was rejecting the anesthesia. I wanted to sob.

On April 29, Lewie was released from the hospital. We would need to bring him back for follow-up visits, but his surgeries were considered a success. He received a huge outpour of love and support from his friends, family, and high school. (In fact, some friends visited him in the hospital!) Now, we are in rest and recovery mode. His side, especially the area of his chest tube incision, is sore, and it hurts him to ride in cars, walk, and do simple tasks. It appears he won't be able to play tennis for the rest of this season, and only now have we been talking about him getting tutoring and seeing if he can attend the last few weeks of school. One mistake I will never make again is to downplay Lewie's physical feelings. If he says something hurts, I believe him, and if he says he's not ready for school yet, then he's not ready.

Lewie leaving Yale with one of his favorite nurses.

As for the cause, it appears that Lewie had an air blister (a bleb) on his lung that ruptured and caused a spontaneous lung collapse. (He thinks the rupture happened on Monday when he felt a "pop" in his chest.) There is no known reason for this happening, and it appears that our trip to Costa Rica wouldn't have caused it in any way, but I am so glad this didn't happen while we were there. Would they have had the technology to take care of him? Would we be charged out-of-pocket for the whole thing? Would he have been able to fly home? The doctors tell us we should avoid flying for the next year, so how would Lewie have been able to come home? 

We are supposed to eat at a restaurant this Mother's Day, but we'll see if Lewie feels up for it. Right now, I just thank my lucky stars that I get to celebrate Mother's Day with my precious "Little Lewie" (and my mom and Daddy Lew, too). As parents to teenagers, we think our kids are invincible. I won't take this fragile thing called "life" for granted for any of us again.