Emlen. I guess we are getting into it – stuff is starting to happen. So far, we have been lucky. In La La Land, I would say. We went six years without a major lung infection, steady growth, general cheerfulness and avoided stays at the hospital. Occasionally, a cold or the flu would require antibiotics or a quick trip to the pharmacy for Tamiflu. That was it, lots of activities, lots of doing.
Last year there was a shift; a tough summer and an autumn of lethargy and colds. After multiple rounds of oral antibiotics and a nasty lung x-ray, Emlen was admitted to the hospital for a clean-out. We did four days at Children’s Hospital in Boston and then 3 more weeks of home IV antibiotics. When that didn’t work, Emlen had a bronchoscopy. It was his first. From what I understand they are a routine procedure. The doctors raved about how good Emlen’s lungs looked, “We thought maybe we had the wrong kid. His lungs are so clear!” However, the results revealed pesky aspergillus, which lead to three months of antifungal meds.
All antibiotics and antifungals can have side effects. His pulmonologist ordered test after test. Antibiotics can affect hearing. We learned that Emlen’s hearing is a bit damaged; but this may be due to the really loud headphone volume he uses regardless of how many times we ask him to turn it down low enough that he can hear us over the noise. Antifungals can affect the liver. We have learned that Emlen’s liver is not the best. It registers two out of three (three is bad) on a fancy new French Fibro Scan test. (Emlen took part in a liver scan clinical study and now the procedure has become routine.) However, since the antifungals had cleared Emlen’s lungs, and both Emlen’s ENT and GI specialist seem unconcerned, we moved forward. We took away the headphones and put the liver issue on the back burner. Emlen was feeling well and back to all his activities. We had a good spring and summer.
This fall Emlen got cranky, stopped eating and had a constant cough. He was already finishing up a round of antibiotics that I had on hand and was not getting better. We had a well-check scheduled in two weeks. Every three months we schlep to Children’s for well-checks. Emlen endures height and weight measurements, throat cultures, pulmonary function tests (PFTs), sometimes blood work and sometimes x-rays. Given his condition, it was too far away. I called and made a sick appointment.
After a lung x-ray and throat culture Emlen was given a prescription for a stronger antibiotic. Standard fix. His doctors were more concerned that he was not eating. The GI x-ray surprised all of us. Emlen was filled with poop – all the way up to the top. We left the pulmonary clinic with directions for a weekend of chocolate Ex-Lax and double doses of MiraLax.
Uncle Doug sent another “I Pooped Today” sweatshirt to replace the one that did not fit anymore. Pooping everyday – sometimes even two to three times a day - is important if you have cystic fibrosis (CF). Food is not digested well and there is a lot more waste than in healthy people. “Got to keep it moving.” the nurse practitioner said. It took four days of being toilet tethered before Emlen announced he was starving. He promptly ate 4 donuts.
“I Pooped Today” is Emlen’s go-to sweatshirt, in part because Uncle Doug gave it to him and in part because I always make a big deal about asking him if he pooped when he wears it. Most of the time he answers me with a huge eye roll and silence. I do not think I have ever seen him wear the “I Pooped Today” sweatshirt out of the house. Occasionally I ask him if he would wear it to school. He gives me an even bigger eye roll. But he loves it. I think he has it on now.
I suppose it is annoying to be ten years old and have your mother keeping tabs on your body's elimination patterns. You would think Emlen would be used to it. It seems that I have been doing it forever; gastrointestinal status is a normal topic of conversation at dinner. Pooping has always been a thing, sometimes a major thing.
Our family belongs to a gym called the Thoreau Club. Emlen and his older brother have been swimming there for years. The club has a pretty strict policy about pooping in the pool. It is not allowed. Swim diapers are required. This is probably the case everywhere – maybe not in ponds – but we do not swim in ponds due to the tendency for them to be full of festering bacteria. If an “accident” happens at the Thoreau Club the pool is evacuated and the cleaning process commences. I have learned over the years that different varieties of poop require different methods of clean up. The Caddy Shack candy bar style is a quick fix and we are back in the water in thirty minutes. Some people are – we tend to go home while the chlorine and filtration system do their thing. Looser, less compact poop means lots of vacuuming and filtering as well as 24-hour shut down for a major dose of chemicals to “shock the system.”
When your toddler with CF loves to swim and has big huge poops several times a day that a swim diaper would never catch, you need to watch him all the time. I worried more about Emlen pooping in the pool than drowning. Even when Emlen was toilet trained he would still have what he called “fast poops.” It was always an emergency. He would jettison himself from the pool saying, “Fast poop. Fast poop. Fast poop.” and run to the locker room. I rarely took my eyes off him, studying his face for any sign of impending intestinal doom. I needed to be near when he panicked.
Those summers I pretty much kept to myself. I rarely talked to people. I heard chatter that I was thought of as unfriendly. I could not figure out how to explain that my child has CF and poops all the time – especially when I would tear up every time I had to mention it. There was no way I could engage in light banter.
My friend and neighbor shared a story with me about a mother wanting to know why I never socialized while our kids were in swim lessons together. Amy, after saying hi to Emlen one morning at school, was cornered in a conversation by the swim mom who asked, “You know Emlen? We have swim lessons with him. His mother never talks. What’s wrong with her?”
Amy, who has been with us pretty from much the beginning of this whole CF thing, with her never-ending tactfulness, merely replied that I had a lot going on. But it would have been perfectly alright for her to say “Emlen has cystic fibrosis. Elizabeth is watching Emlen for big fast poops. With cystic fibrosis, you never know when the poops are going to happen. She needs to get Emlen out of the pool as fast as possible. That is why she never takes her eyes off him. That is why she cannot talk.”
Sometimes it is better to have other people relay your personal stuff…
That summer Emlen had daily swim lessons. I sat at the lifeguard table on the pool deck. It had a good command of the water and was near the door for quick escapes. It had an umbrella. I like the shade. The guards were always pleasant because Emlen happened to be adorable and was an easy student; and their was chatter entertaining, especially that of Lola's, Ernie's and Trip's. Those are not their real names. I never learned their names. I felt these names suited them as well if not better than whatever their parents had come up with.
Lola was perfect – as in long blond hair, gorgeous smile, athletic physique … Barbie perfect. She wore a lot of pink. I was certain she belonged to a sorority. She was very much at ease with her popularity and enjoyed being the center of everyone's attention. Boys wanted to be near her and girls wanted to be like her. She was friends with everyone.
Ernie was cute, slightly pudgy, with short curly hair and brown eyes. In the heat, his ill-fitting glasses always slid down his nose. At one point, he fixed the problem with the addition of Croakies, the elastic that attaches to each ear piece and wraps around your head. While his glasses stayed put, his hair stood on end in all directions. He went to an Ivy League College. He always had a text book with him and was ever ready for an intellectual conversation. He drove a Prius. He was great with kids. The children flocked to him just as much as they did to mesmerizing Lola.
Finally, there was Trip. He was a six foot three tan Adonis. Conservatively cut brown hair, big blue eyes and a symmetrically chiseled face topped off his broad shoulders, carved six pack and sculpted legs. He was eye candy for all the moms at the pool. I imagined him dating Sundance Catalog models back at his southwestern college. My Pilates teacher refers to people like this as Art. He certainly was – a modern Michelangelo’s muse. Trip did not talk much. I couldn’t tell if he was clueless or the quiet brooding type.
The three of them had this weird sort of crush triangle vibe that summer. Lola was attracted to Trip. Ernie had a crush on Lola. Trip seemed to be unaware of the situation or was maybe smart enough to not get involved. I am still not sure.
On one particularly hot afternoon, Lola was freaking out that Trip was late. He had a few lessons to teach. On our way into the club we had passed Trip running up the hill. I thought of mentioning it to Lola – that Trip would be there momentarily – but Ernie was having a really good time being around Lola. He had offered to take over Trip’s lessons. He was sorting out the schedule. He was thrilled to be able to maybe, just maybe, save the day. Lola was half paying attention to him – more focused on the lists of students and time tables on her clip board. Ernie didn’t seem to care. It was his bliss.
Then the doors flew open. Trip walked out onto the pool deck. Sweat was dripping from every inch of him. His wet shirt revealed his cut pecs and rippled abs. His flowered board shorts clung to his massive swimmer’s thighs. Even though he was exhausted, he was a sight to behold. Lola ditched Ernie and leapt towards Trip. Dejected, Ernie sat in the chair beside me. He opened his chemistry book and began to highlight.
Lola cleared two seats on the other side of the table. She told Trip that his lessons could start a bit late; he needed to hydrate. She asked Ernie to take over for the first 5 minutes. Ernie shrugged, but agreed. He was not willing to jeopardize any possible future attention from Lola. Lola fetched Trip some water and asked where he had been. Trip explained that he slept late. When he woke up his mom and the car were gone. He had no ride to work. He decided to run in.
Lola thought this was a great idea until Trip explained that he lived ten miles away. “You ran ten miles in 95-degree heat?” she questioned sympathetically.
While I was wondering if Trip could have made better choices, like bring a water bottle, or run in running shorts or, perhaps, call someone for a ride, Lola slid her hand onto Trip’s thigh, turned and stared into his eyes. She offered, “You know, if you ever need a ride you can always call me.” Trip nodded, drank his water and said nothing. He stood up and removed his soaked shirt. Glistening, he jumped into the water. Lola, spell bound, remained at the table. Ernie climbed out to the pool, toweled off and resumed his studies.
Lola had it all wrong. She should have been interested in Ernie. He went to the fancy college, studied and was great with kids. He had his own car. I wanted to explain to her that Ernie was the one who would be a better life partner. Deep in my thoughts I almost missed Emlen climbing out of the pool. I had briefly forgotten my purpose. “Fast poop!” he announced and we scurried to the bathroom.
Emlen never pooped in the pool that summer. (Emlen has never pooped in the pool.) As a result of my vigilance, I never found out if Lola dated Trip, if Ernie secured Lola’s phone number or if Trip figured out that running in a bathing suit causes chafing.
As Emlen got older and began to deal with the GI and bathroom issues on his own, I was able to step away. I finally made some good friends at the pool. They understand what we are dealing with and are incredibly supportive. Emlen has made some good friends too. They all swim on the swim team together. Last year when he was hospitalized, he missed half the swim season. He was disappointed, but all his buddies sent get well cards and gifts and cheered when he showed up at practice to help coach.
This year we are in better shape. At the first meet of the winter season, Emlen swam the 25-yard butterfly in 14.96 seconds. He broke the team record. The antibiotics seemed to have done their job. For the moment, his lungs are fine.
It is the GI situation that is troublesome.
We see Emlen’s GI specialist in early December. Perhaps she will have more insight this time.