Breathless: Diagnosis and Moving On

Day 3: Putting a teddy bear beside him
almost made it seem like he was just sleeping.

Day 8: Two days after the breathing tube was removed.

Day 5: Big sisters get to visit. He was still sedated.

So, back in August, we passed the one-year anniversary of The Big Scare of 2014 – Trent’s hospitalization. In the days leading up to the anniversary, we had lots of flashbacks of the utter shock and despair of August 7, and the ten days that followed. However, in spite of the indelible memories and the ripples that followed, I sometimes thought if we didn’t have pictures and video, it would’ve been hard to believe it really happened. But it really did. And now it’s December, and we’ve hit another important one-year anniversary: the day we found the final piece of the puzzle that helped us understand what made our healthy boy so very sick.

He was released on August 17th, weak but happy, with lots of balloons and toys, smiles and well wishes from the staff … and with follow-up appointments with specialists. There had to be a reason why he got so sick, pneumonia plus something. What was the “something”? As we drove up our gravel road on the way home from the hospital, I was increasingly nervous. Could it have been an allergic reaction to the new paint in our recently-remodeled bathroom? Our musty basement? The old barn he and Grant played in just before he got sick? Was it something in his bed, where I found him gray that morning? It was unsettling to be taking him back to the place where it all started … especially since it was our own home. He and I slept on the couch that first night.

The next few days and weeks were full of phone calls, filling out forms and taking my reluctant little guy to appointments. The infectious disease doctor who treated him in the hospital drew three tubes of blood to test for common and rare blood and immune disorders. We tested him for Cystic Fibrosis. For the first time ever, we got flu shots for all the kids. At the advice of the doctors, I made several trips to the county health department and we had our well water tested for nitrates, nitrites and bacteria.

I even met with a local agricultural company which tests herbicides directly across the street from our house. That’s practically a story within a story.

“You HAVE to find out what they’re spraying”

For years, there’s been a small plot of farmland across our gravel road that has been used for testing herbicides. Before last year, we weren’t sure what they were doing, but it was obvious they were testing something. Most of the time, there’s no one in the entire field except the farmers during planting and harvest time. Occasionally, we’d see a couple of guys with small farm equipment tilling, planting and hand-spraying that plot. We also saw them walking around with clipboards, taking notes. Sometimes, I wondered if I should be concerned - after all, ours is the only house within a half mile in all directions, so why would they care if it was harmful?



But when Trent got sick, we considered everything. While talking to the pulmonologist at the hospital, I mentioned the test plot. He was alarmed. “You HAVE to find out what they’re spraying.”

So, I scheduled a meeting with some reps from the ag testing company. I was vague about why I wanted to meet, saying we had a child with breathing issues and were looking for causes. They came to our home, bringing several folders and lots of documents describing the materials they worked with. “Everything we use is commercially available,” they said as soon as they came in. I was not reassured. After describing what they did and assuring me they took precautions, they asked for more details about Trent’s “breathing issues”. When I gave them the summary of what happened, they were quiet. I asked: was it possible that what they sprayed could be a factor? They couldn’t rule it out, except for one important fact: they hadn’t sprayed anything in the fields for at least a month prior, and the chemicals were absorbed into the ground within 24 hours of spraying. What if our dogs were there right after the spraying, then came into the yard and Trent hugged them? They admitted they couldn’t say for sure if that would cause problems, but timing would be an important factor in that. As they left, they asked me to keep in touch and offered to move their operation if necessary. It was all very unsettling, but the delay between the spraying and Trent’s illness made it seem unlikely to be a factor.

What was most promising to us was the upcoming pulmonology appointment. I’d heard about the “pulmonary function tests” they performed which diagnosed underlying lung issues. This was the possibility the doctors had talked about most often, so I had high expectations for this visit. Surely, it would give us answers.

Appointments and disappointments.

The hour-long appointment was with a nurse practitioner who asked many of the questions we’d answered in the hospital. He examined Trent, who was perfectly healthy and had been since his release. We talked about his medication (it was the first time I’d ever heard the terms “control med” and “rescue med”), the hospitalization, how rare the plastic bronchitis was, how lucky we were. But at the end of the appointment, we left without any solid answers. Unfortunately, the pulmonary function test couldn’t be done until he was at least 4 years old, which was just one month away. I updated Mom on the way home, “There’s no news. We’re just supposed to keep giving him his daily breathing treatments. They don’t know; they’re just basically treating him like an asthmatic.” I felt defeated. In spite of some doubts, I followed doctor’s orders and kept giving him his meds. The memories were still too fresh and terrifying, and I wanted to do whatever we could to avoid it all again.

Other leads were dead-ends, too. When the water tests results came back, I told Mick: “I have good news and bad news.  The good news is: our water is fine. The bad news is: our water is fine.” The Cystic Fibrosis test was negative. All the blood work came back negative. “Trent has a healthy immune system,” the doctor said. When I told this to a friend, she sensed my ambivalence. “This is a good thing, right?” Of course it’s a good thing – a wonderful thing! - but if we don’t know what caused all that, how can we prevent it from happening again?

So, the days passed and I kept replaying everything in my head, trying to make sense of it. Trying to understand. Trying desperately hard not to worry. But I did. I worried each time I heard something that sounded even remotely like gasping for air. And little boys just love to make sound effects, so that happened a lot. I worried if he was too quiet, especially in the car. “Trent, are you OK?” “Yes Mommy. Why do you keep asking me that?” Many mornings, I’d sneak into his bedroom just before it got light to check his face for signs of gray and listen for steady breathing. One morning, I noticed what looked like a huge purple bruise on his arm. Could this be it? That “something other” that had made him so sick? I examined it more closely and realized it was slightly sticky … from the sap of the pine trees he’d played in the day before. The red of his pajamas mixed with the blue of his sheets, creating a bruise-like shade of purple!

I really tried to let him play and just be a little boy, but it was hard. I nearly lost it when I found him sliding down a pile of ag lime with the other kids. All that fine powder and his recovering lungs. I bathed him as fast as I could and watched him closely, expecting him to start gasping any second, ready to grab the Albuterol. Another day, I found him playing outside and noticed light grayish-blue coloring around his eyes and mouth. I grabbed him in a panic and looked at him, checking closely for the signs of respiratory distress I’d memorized. Grant walked up and casually said “That’s blue chalk. We were pretending to be Indians.” OK. Exhale. Release death grip. Wait for blood pressure to return to normal. Apparently Grant has a bright future as a make-up artist.

The picture I managed to take after recovering from my panic.
Note the blue coloring around his eyes, nose and mouth.

In spite of all my worrying, he was thriving and growing and staying healthy. But I felt fundamentally changed. For the first time ever, I got teary when I changed out his summer and winter clothes; out with the 3Ts, in with the 4Ts. Reminders that, not only was he still with us … but growing. I watched as he ran out to hug Grandma and Grandpa when they came to celebrate his 4th birthday and wondered what we would’ve done that day if the unthinkable had happened. All the milestones, big and little, were packed with emotion and significance now.

  

And then, finally the answer started to become clear … in one of our very own kids.

An answer at last.

In October, the weather grew colder and Erica told me about some chest tightness she’d been having. Hmm. My now-sensitively-tuned Mom Radar lit up, but there was enough of the old laid-back mom in me still that I was able to reason through it and try to wait it out. “It’s probably just a cold coming on.” A week or so later, she mentioned it again, but there was no sign of a cold. I started looking at her more closely and thinking. She’s always had stuffiness, probably mild allergies, but been otherwise healthy … except that cough. For a while (a year? two years?), she’d had a very mild, dry cough. A cough that was always just so there, that I’d passed it off as habit. She doesn’t even realize she’s doing it, I thought. Eventually, I’m sure I didn’t even notice it. But now, I wondered: could it be related to the chest tightness?

Erica and Trent

I called our doctor, feeling slightly paranoid, but he understood my worrying and had her come in. There were a few things that could cause these symptoms, and as he named them off one stuck out: asthma. There it was: asthma being brought up again. Back in the hospital, I’d told the doctors we had no immediate family history, and with 5 siblings and 30 grandkids on one side of the family, I felt confident asthma wasn’t a factor in all this. It couldn’t be: asthma was minor, I thought - little kids wheezing and needing their inhalers for a quick fix and then they were fine. I’d never heard Trent wheeze, or Erica … and … what was asthma, really? I had to admit I wasn’t sure, but it wasn’t on my mind at all. Until Erica. That first doctor visit led to another, which led to a pulmonary function test. And finally a diagnosis for her chest tightness and innocent-sounding cough: Asthma. And suddenly, we have a family history.

Exactly one week later on December 4th, Trent and I were at his follow-up pulmonology appointment, and I was face to face with Dr. Akanli, the doctor who had done his bronchoscopy that scary day back in August, who had talked to us in the parent conference room, nervous and grilling us with questions. The one who’d said he was critical and was sure there was underlying lung disease. Seeing her and hearing her voice - her distinct accent - brought it all back to me; it was impossible to keep from shaking.

She was eager to get a thorough report of how he’d been doing, and she listened carefully and asked several questions. I brought her up to date on everything, all the follow-up appointments, the testing, the daily breathing treatments, his fantastic health. Oh and by the way, his 14 year old sister just got diagnosed with asthma.

As soon as I said this, she nodded, like she somehow knew it was coming.

Then she said: “I am 100% sure Trent has asthma.”

Even though Erica’s diagnosis a week earlier finally made me think of asthma as a distinct possibility, it was still strange to hear her announce it. I think I just said “No kidding?” But there it was, finally. That “other thing.” And ironically, it ended up being something I’d been so convinced was simply a non-issue. Harmless, I thought. To learn that something as common as asthma could’ve contributed to what we went through was truly incredible to me.

She went on: “What Trent had that day was a type of asthma called a Near-Fatal Asthma Attack, triggered by the bacterial pneumonia he had. It is rare, but it is possible for a person to have a near-fatal asthma attack with no previous symptoms of asthma.” No previous symptoms.

He had always seemed so healthy to me – that’s what I’d told everybody, right? - but when life calmed down, and as time went on, I started remembering. There had been more than one midnight trip to the ER for bouts of croup; the most recent one happened two months before he got sick. That night, it took two rounds of breathing treatments to get him calmed down. “This is unusual. I never have to do this twice,” the therapist had said. Why hadn’t I remembered that when we were going over his history? Was it a red flag?

Then there was this picture I found of him I’d put on this very blog:



It gave me a start when I came across it one day. We’d gotten that nebulizer for Grant’s croup episodes. I had no memory of using it for Trent at such a young age (he was 6 months old). How could I have forgotten that?! Another red flag? But, would it have made a difference at the time if I’d remembered? Probably not, but things like this have shown me how unreliable a person’s memory can be during a crisis - even a parent's. It's no wonder diagnosing can sometimes be so difficult.

But I was thankful that so many things were coming into focus and finally making sense. I thought of a conversation with Kelly at the hospital, as I agonized over what could’ve caused everything and if I could’ve somehow prevented it. “We don’t know why God has allowed this to happen, but maybe it was to reveal something about Trent that you didn’t know.” In the end, she was right, but what I didn’t suspect was that the whole ordeal would also reveal something about Erica that we didn’t know about. Without Trent’s illness, how long would I have let the benign coughing go on before something happened to her? What would the outcome have been? Trent is our “baby”, but frankly, I don’t want to see any of our kids hooked up to a ventilator in intensive care, especially if it can be prevented.

But now we know and we’re moving forward and I’m learning and reading, asking questions and listening to the experts, those who have devoted their careers to learning about and treating kids and their conditions.

An unexpected treasure.

Trent still has pulmonology appointments every three months. He actually looks forward to these because of the stickers he gets to pick out and the friendly doctors and staff, but he especially likes the pulmonary function tests he does every time now, when he gets to try to blow all the candles out on the computer screen, or blow hard enough to move the computerized turkey across the finish line (his favorite ;-).

The doctor’s office is attached to the same hospital he stayed in, so after a recent appointment we visited the intensive care unit. By God’s providence, Dr. Williams, the very doctor who worked on him so expertly that first day, was working. When he spotted us he came walking up with a smile. The nurse assigned to Trent on his final day in intensive care was there, too – the one who helped him walk for the first time after coming out of sedation. And Roger, one of the respiratory therapists who worked with him, came by. I caught them up on how he was doing and they smiled while they watched Trent hop around and talk excitedly about little boy things.

When I asked if I could get a picture, Dr. Williams smiled a little and said “Sure, but I don’t know why you’d want a picture of me.” I wanted to yell “What?! Do you all realize what rock stars you are?!!” but I kept it together and took just one picture that turned out well, in spite of my excitement:




To us, this picture is a treasure: a perfect cross-section of the doctors, nurses and respiratory therapists who worked so hard and so well with our little boy. After coming through something like this, there’s an overwhelming feeling of gratitude to those who had a hand in his care, for each person who encouraged us, supported us, and demonstrated their devotion to getting him better – from the specialists, to the sweet cleaning lady who left a handwritten note of love in his room. Gifts to these people - thank you cards, pictures, homemade treats … all of these seem so inadequate. Instead, I think their greatest thanks comes from knowing they had a role in preserving a young boy’s life. A life which we are excited and thankful to watch unfold.

May it be to God’s glory.