10 years
ago this month, I was 8 months pregnant with #6 and our house looked like this
- a little like something Virginia Lee Burton might have drawn.
The humble Worley home, May 2006.
We bought it when we got married and lived in it for about 13 years. It was a
decent old house, with 1500 square feet, central air (added the first hot
summer we lived in it), a remodeled kitchen ... and one bathroom.
As the family grew, we talked occasionally about whether we should move or add on.
Most of the time, three bedrooms seemed like plenty, but there was that one
bathroom.
The decision to do something finally came one morning when we were rushing around
getting ready for church and found ourselves all brushing our teeth at the same
time in that one tiny bathroom. With one sink. I thought “OK, this is
ridiculous.” And kinda funny, too.
We started looking for other houses nearby, but just couldn’t find that perfect mix of
location, size and price. So, we looked more closely at our own little house,
with its 2.5 acres and perfect location. Then we started talking to a custom
builder and an architect.
Just before we started adding on, when I was starting to outgrow my maternity clothes.
When Baby Claire was 7 weeks old, we finally started work on the house. Major work. Like,
rip off the side and part of the roof work. And dig a basement under the new
part. Attach the garage. Build another staircase. Remodel the kitchen (again).
We moved out for seven months to a rental house down the road and watched our
little house slowly turn into what we have today: a good blend of old and new.
More than double the space (with almost double the mortgage payment), beloved
creaky floors in the old part,
more storage in the new, a gathering
place for big reunions and dreams of future generations coming to visit.
We’re still surrounded by farmland, with the creek at the edge of the property, and a
gravel road running past the house. It’s a work in progress, but we’re getting
there. And now we have 3 (three!) bathrooms. Which is enough. Most of the time.
Bedtime stories. Frances is always a favorite. I remember reading these stories when I was a girl.
Most of the time, he's very accommodating for the camera. ;-)
A recent bedtime when Trent was scared and wanted to get in the girls' bed for awhile.
Watching spring unfold...
Last weekend was the first warm weekend, so we had fun staying out late.
This was about 9pm Sunday.
Brooke got some new pointe shoes, so she needed to sew the ribbons on. A beloved task (not). :-)
Sarah, Brooke, Claire and Grant have started piano lessons recently. Trent's close to being ready, but not taking any yet, so for now, he has fun just playing with the piano.
True story: Midwest in the 1920's and '30s. Huckster John R. Brinkley makes millions off his ridiculous goat-gland transplant surgery, which is supposed to restore "youthful vigor" (placebo effect, anyone?). He also ran for governor of Kansas (and narrowly lost), built the most powerful radio station on the planet, from which he advertised his sham surgery and worthless remedies, discovered country music stars ... and left a trail of injured and dead patients in his wake. Brinkley's notoriety soon got the attention of Morris Fishbein, editor of the JAMA, whose reputation as a quack-buster was legendary. His mission became one of exposing and bringing Brinkley to justice. The question wasn't "would Fishbein get his man?," but "how" and "when"?
I forced myself to stay off the Internet while I read this, because I didn't want to find all this out from some bland Wikipedia article, but from Pope Brock's hilarious, riveting storytelling.
Two truisms I was left with:
1) The truth really is stranger than fiction; and
2) There's a sucker born every minute. Still. In post-modern, cynical 2016.
Last Monday was a typical gray spring morning. It rained off and on and looked generally dreary, since we're only just beginning to see the start of green here and there. That morning, from the kitchen window I spotted the only bits of color in the yard: the crocuses.
Since they're so small, they might be easy to miss in a big yard, except their colors are so bright! I can't even remember when I planted them -- at least 15 years ago, I bet. I ordered them from a Breck's catalog, and was sure they'd spread and create this carpet of color in the front yard. I was wrong - there are still only about 5 or 6 of them, but they are one of the highlights of spring for me, partly because they're always the first spring color we get!
It wasn't until I downloaded the picture to my computer and saw it on the monitor, that I noticed all the water droplets. I read a quote from Jim Wilson once that said something like, the more distant you are from an object, the more mysterious it seems. This is true when you think about the view from an airplane, or of a distant house lit up at night, or faraway lands. But what is also true is that the closer you get to an object, the better you can see and appreciate its detail and beauty -- things you couldn't have seen from a distance. The beauty is there, surrounding us, or as Elizabeth Barrett Browning said
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.
