“We are going to the ER.” “Right now” I say? Lowell and Sam have just arrived at the Highline Ballroom where my event, Rock the Night to Cure Crohn’s and Colitis is about to begin.
This situation has escalated over the past 10 days while we have been in New York City. There were emails and conversations with doctors, a visit to urgent care, and an attempt to resolve things without ending up in the hospital. This is a typical scenario with a chronic illness, and in particular for Lowell, a reality we face managing his Crohn’s disease while traveling. There are many reasons why traveling with Crohn’s can be hard — being away from normal routines, a different diet, susceptibility to infection due to lowered immunity, increased inflammation from altitude in travel, etc — and for our family, this has impacted our lives. Mainly, our travel has been very limited over the past few years. This trip seemed fun because who doesn’t love New York City around Thanksgiving? The opportunity to spend more time here thrown in with my event was tempting so we decided to go for it, though we were worried that being away from home for Lowell might be risky.
Once in the city on Thanksgiving morning, I had skipped my usual, drag everyone to the Macy’s Thanksgiving Day Parade, and swapped it for a SoulCycle class with my friend Tori. Jonah had joined us from Chicago for the Thanksgiving weekend. We fit some fun things in like a Nets vs. Timberwolves game at Barclays, and Jonah and I managed our usual trip to Serendipity with a stop at Bloomingdales while we were waiting for our table. Jonah did not understanding why I had complained that going into the 60th and Lexington flagship store was overwhelming. It is gigantic. We couldn’t find the bathroom, people were coming at us with perfume, and the elevators were impossible to get onto, among other things. We left there without purchasing anything, and were unsuccessful in finding the bathrooms. The frozen hot chocolate at Serendipity made up for it!
Jonah had to fly back to college at the end of that first weekend, and during the week things started to go downhill for Lowell, leading up to December 1st.
“The bumpy cab ride here was too much and the pain is worse, so yes, we have to go to the ER,” continued Lowell as I was gearing up for the arrival of our guests at the event. The night before, the doctors at the urgent care had suggested that Lowell go to the ER but he opted to try some things at the hotel to relieve his symptoms before resorting to this. I had advised him to go, knowing that he would likely end up there at some point. Yeah, I was right, and the timing sucked.
I had to continue running the event, and many people attending were planning on seeing Lowell and Sam so with each person, I had to convey the news. I knew that it would take hours for them to get through the ER and all the testing. Likely Lowell would be admitted, and Sam would be with Lowell through all of that until I was done.
We had two comedians and two musicians perfoming and the event went very smoothly. I even laughed several times during Bill Burr’s set and not just because he was hilarious, but also because I was relieved that the audience was into it as I was concerned they would find his humor too brash for our event. The people at our events, or maybe any event, tend to be talkative during performances. This drives me insane. I complained to Bill about it right before he went on. He took care of it, telling the ladies chatting upstairs to stop talking (he might have said it more harshly) because “no one cares what grade your kid is in.” Exactly.
The music was energetic and I appreciated the effort that they and all of our volunteers put into making it a success. My son’s doctor was in attendance and I found out at the end that she was communicating with her colleagues at Mount Sinai about Lowell during the event. It turned out his c-reactive protein, a marker of inflammation, was over 200 when normal range should be under 10. This likely indicated an infection of some sort that probably triggered a Crohn’s flare.
Sam and Lowell were toughing it out in the ER so I went out for the traditional post event celebration because I was starving. Friends from LA and NY all went to a pub for more tequila, delicious French fries and I don’t remember what else, but I think I took some bites of my friend Jim Spring’s fried chicken sandwich, and took a lot of selfies with my friend Katy Otey. I made it back to our hotel around 3AM, and I slept for 4 hours before heading uptown to Mount Sinai. I spent the whole day in the ER with Lowell after he and Sam had been there since they had left Rock the Night, as no room in the hospital had yet been available. Sam left to go back to our hotel to sleep and I took over, fighting our way to a private room after they offered us a shared room with an infant.
Once Lowell was admitted, Sam agreed to spend the two more nights we had to stay there overnight as I was trying to get some rest and recover from the event. I spent the days with Lowell at the hospital. His inflammatory markers began to come down with the steroids and antibiotics. After 3 nights, including the one they spent in the ER, we left then flew back to LA the next day.
It was exhausting and took me about a week to start to feel somewhat normal again, though I am still in a recovery mode of sorts from 2018 in general. Back in Los Angeles, what lay ahead of us was this three week stay that we are in the middle of now. We are at the Mayo Clinic in Rochester, Minnesota, a city that seems to rise out of the corn fields, for the Pediatric Pain Rehabilitation Center (PRC) program. It is a very structured and intense program for adolescents, young adults, and their families who are coping with all kinds of pain and other symptoms that have reduced their functioning.
The program consists of groups, meetings, physical therapy, occupational therapy, biofeedback, cognitive behavioral interventions, deep breathing, mindfulness, and a lot of social activities with the 15 or so other kids and families here.
Last January, we were in the land of technology-Palo Alto-for a similar program at Stanford, and while that was very good, this program is more aggressive and focused. Unlike last year, hopefully Lowell wont have a new pain issue come up when we leave here next week which is what happened after we returned to Los Angeles from Palo Alto last year. That made it difficult to move forward with the routine he had started in that program. We are a few days away from completing this program in Rochester.
Which brings me to the Rochester, Minnesota lifestyle. I found a hipster café! We found a restaurant/brewery that offers food we can eat, a warm atmosphere, and live singer songwriter music. Our hotel has a small kitchen (like our digs at the Ronald McDonald House last year, the smell of the free breakfast and nightly light supper here which includes things like tacos in a bag-not quite sure what that is, is unappealing) so I stock up on food at the People’s Food Co-op. There is one restaurant right downstairs that serves smoothies, juices, veggie burgers, kale salad, chicken bowls and other healthy fare. We dig it and this place is a lifesaver. My time is broken up and I am back and forth between the St. Mary’s hospital across the street from our hotel daily for parent groups and meetings, and I squeeze things in between those like the occasional Barre Class, in room 10–20 minute workout with an app I downloaded, charity business I need to take care of, and maybe some time to read or watch Netflix-currently watching Glow. It’s all-right.
Last year my soundtrack at the Palo Alto Ronald McDonald house was Ryan Adams’ album Prisoner. This year on my headphones as I walk through the hospital it is this song by Trapper Schoepp and the latest Jeff Tweedy release, WARM.
There is so much that happens here every day and it is hard to convey the philosophy and daily routine. I take notes every day about everything so maybe one day when I write the book I hope to, I can go into more detail. The PRC addresses pain, PTSD, mental health issues, parenting, chronic illness, coping strategies and more. It is up and down and there is always something to do or think about. The first few days they were concerned about Lowell’s weight. He is back to doing NG tube feeds nightly and has gained a few pounds. They had suggested we might go to Children’s Hospital in St. Paul for a week to focus on calories and weight gain, but gave us the first weekend to try to increase on his own, which he did because really, not sure we would have been able to stick out a week long hospital stay in an unfamiliar city, then a return here to this program for 3 more weeks.
The other kids in the program have different challenges, and although they said they have had kids before with chronic pain due to Crohn’s, there is no one here now who has these issues. The kids are all coping with pain and other symptoms such as nausea, vomiting, fatigue, brain fog, and more from other diagnoses. Mostly the treatment is the same. Researchers and doctors have learned about Central Sensitization, which to put it simply, is pain that stems from an original injury or medical issue that forms pain pathways in the brain and nervous system that are perpetuated by many factors.
The Mayo Clinic lives up to its reputation as an excellent institution using scientific and clinical research to offer the best care.
We will be home soon, back to the warm weather, our dog and the beginning of another new chapter in our health and life pursuits. 2018 was filled with numerous challenges and craziness-Rock the Night in Los Angeles and New York, other charity events and programs, many hospital stays, Lowell’s high school graduation, and a hot, smoggy, LA summer with not much opportunity for family fun. Even though it is just a date on the calendar, bring on 2019 because 2018, you kicked my ass. As we joke about here at PRC, the answer to everything is always this kind of deep breathing. #2019goals.
