I've landed

I’m on a small airplane, somewhere over Indiana or Ohio, Coldplay’s “Don’t Panic” is playing in my earbuds. I’m looking down on my life from 30,000 feet, as I feel I have been for the past month and a half. I’m finally on my way home.

When I last had the chance to write, I was in an entirely different place than I am today. We deeply enjoyed our last days as Cincinnatian’s, packed our things, and went on our way. Hershey, PA was our ultimate destination, and I knew so very little of how winding that journey home would be or how much I would learn on my way there. From Cincinnati, we visited Charleston for a week with our family. Right before we were to leave, I got hit in the face with a line drive at a minor league baseball game and have been in bed ever since. Through the ups and downs of the past six weeks, my only regret is having been so consumed by my every day that I did not recognize all of the signs that were pointing me toward a slower, more purposeful life, and that it took getting smacked in the face with a line drive to really slow me down, to really wake me up.

 A long story short, the accident caused a pretty significant concussion, and my brain needed rest. I laid in bed – tired, sad, confused, angry – the timing was bad. I’m the social organizer for our family and I couldn’t even get out of bed as we moved into a new house in a new town and didn’t know a soul. My presence online faded to black. Text messages went unanswered. Twitter carried on without me. And I laid in the dark with only my thoughts.

When I was able to talk to my friends and family again, the biggest question they would ask was “How are you?” I don’t know how I was. I still don’t know how I am. My brain isn’t working right. My decision making isn’t rational. I go to rehab. Sometimes I check my email. I talk to the kids. I go for a walk. I go back to sleep. There’s been lots of crying trying to understand and make sense of all of this, and as the fog starts to dissipate, it is all becoming clear to me. I’m exactly where I’m supposed to be.

I left my house on Thursday morning last week with the goal of attending the most soul-filling event with the most awe-inspiring strangers and friends that I’ve ever met anywhere in the world. I was bound for Palo Alto, and I hid in a stall in the bathroom at the Harrisburg international airport, alone, and paralyzed with fear. The anxiety that I’ve acquired as a result of the concussion has been profound. I took a valium, a looked at strangers searching for support and understanding, and eventually I got on the plane. I called my husband from Chicago, overwhelmed and lost, and we walked me through how to get to my gate, how to get on the next plane, what to do when I arrive. One step at a time. I thought I could do this. I felt ready. It felt to me like what I needed, the healing presence of friends. The doctors have continued to say that only I know how I feel, and I need to balance the necessary rest with the slow challenge of rebuilding the pathways in my brain that were disrupted when I was hit with the baseball. I’m doing the best I can. I had had lunch with some new neighborhood friends the week prior, and had even made a trip to Target on my own. Social situations weren’t my problem, I thought. I couldn’t focus on a computer screen, but I could certainly have a conversation. I didn’t anticipate the overwhelming nature of the many moving parts and the many conversations that happen inside of an airport, and at a conference as vibrant as Stanford’s MedicineX.

A friend picked me up at the airport in San Francisco and for the first time in a lot of hours I felt safe again. We made our way to Palo Alto, staying with a small group of friends in an Airbnb, the perfect place away from the normal chaos of the shared spaced at the Sheraton where I’ve stayed in the past. We wore comfy clothes and caught up. We went to bed early and, in the morning, left for the conference. It was more than I could handle. A combination of physical fatigue and emotional hyper-stimulation took over and I realized that I couldn’t handle being there. I was at MedicineX for half a day and I spend the rest of my time back in the safe embrace of my friends at the Airbnb.

I’ve only ever attended MedicineX as a caregiver, and now I was a patient. But I was a patient with an invisible illness. As I stumbled past old friends on my way to get a breath of fresh air, I could only force out half a smile, maybe wave my hand, and just keep going. I saw confusion in the eyes of many old friends as I blew past with a laser focus on getting to wherever I needed to be. There were less hallway conversations, fewer hugs. But very few people knew what had happened, what I was experiencing. I wanted to stop and tell them my whole story, to listen to theirs, to reconnect like we do every year in this wonderful place, but it was taking all that I had to just focus on the immediate next step in front of me. I missed the breadth of connection that usually fills my extroverted self with so much joy, but it was replaced with a depth of connection with a simple few that was just what I needed. The best part of the conference this year was the opportunity to deepen relationships with the 5 people I shared a house with.

I laid in bed at night so disappointed in myself. I had made the wrong decision, I thought, to leave the family that I hadn’t even really been an active part of for the past 2 months, to go see my other family, my healthcare tribe. Feeling the drain brought guilt that I would be returning home and working from a void. And the entire time I knew that my brain wasn’t working right. I wasn’t sad, I was feeling sad. I wasn’t tired, I was feeling tired. I wasn’t a disappointment, I was feeling like a disappointment. There wasn’t permanence in any of this.

When I woke up on Sunday morning I was faced with the daunting task of getting on a plane again. I was still recovering from my first flight three days prior, and I wasn’t heading home. They came to my bed to coax me out of it. The drove me to the airport and arranged an escort so that I wouldn’t feel alone. They gave me hugs and laughs promises of reunions sooner rather than later. They gave me their vote of confidence that this new adventure was exactly where I’m supposed to be, and the journey is a part of that. I was on my way to starting a new job, one that I was supposed to start in August prior to getting hit in the head with a baseball. I didn’t know what would happen when I landed in Indianapolis. I didn’t know if I would be able to get to my hotel, or if I would be able to make it to orientation the next morning. I was encouraged to ride the wave, one foot in front of the other, one decision at a time. Get to the hotel. Put on my pajamas. Go to sleep.

I made it to orientation, and when the materials in front of me read, “Ask yourself everyday what you can do to improve the future” I again felt like I was just where I was supposed to be. I have a contribution to make, and I found a receptacle for it. I’m so tired of fighting, of pouring all of my energy, truly my heart and soul, into swimming against the tide. I found my wave and I’m gonna ride it for a while.

Orientation went well. My doctor and I had discussed how only I know how I feel and how it wouldn’t be a switch that turns back on, but rather a retraining of my brain, an exercising of the muscles to regain strength, physically and mentally. I spent a month laying in bed, thinking about my life from 30,000 ft above it. I fell asleep thinking about it and I woke up thinking about it. I got to sit and watch for a while. I got to take a break. The opportunity that is before me is to start exercising my mind again, in a new place and space, with this newfound experience and knowledge, at a slower pace. My new coworkers supported me in my need for breaks on those first three days. I could sit in a conference room and ask questions and take notes. I couldn’t make it out to dinner. I could sit in the common area and engage in conversation about why I said yes to this job, and what I hope to bring. I couldn’t have the same conversation while walking.

I got into an Uber yesterday afternoon on my way to the airport, finally on my way home, realizing that this was, after all, exactly what I needed. On the way to the airport, we drove past a sign for Cincinnati and I was filled with memories of that time not so long ago, of my desire to be there again where it was familiar, and safe, where it was easy and where we were all happy and life was good. What I want more than that right now is to go home, and home is in a different place now, called by a different name.

I feel like I’ve been floating above my life ever since we made the decision to move back in May, and I’m finally about to land. A thousand things have happened between now and then that have made me question our decision, and yet the universe is putting us right where we belong. The new perspective I’ve been afforded in all of this is incredible, and it’s not something that you could have ever asked for. I wouldn’t change any of it. I’m grateful for all that has happened – the pain and the fear and the uncertainty. The kids learned agility and bravery and vulnerability through this. I learned patience and kindness and gratitude. As we began our initial descent, I can’t help but feel like I’m finally landing exactly where I’m supposed to be. I wouldn’t be as tired, or as healed as I am if I hadn’t experienced the challenges of the last 6 weeks and the last 6 days. So I’m raising a glass to you, universe. A glass of sparkling water since booze is still off the table. I’m offering a toast to my team – my family and my friends, near and far, who have stuck with us on this crazy adventure. All the love to you. I want to live a life with greater purpose - the "if it's not a 'Hell Yeah!' it's a 'No'" kind of life. I want to help other people to experience this clarity and joy of living wholeheartedly without having to experience the trauma or tragedy that is often what brings us to it. Today I will get out of bed. I will pour my coffee. I will open my computer. And we will see what life brings next.

Home

If you’ve spent any time reading my writing in the past, or living as my neighbor, or being Facebook or Twitter friends with me, you know that I’m rarely at a loss for words. I have lots of thoughts and feelings, more than enough opinions, and passion that runs through me like a river. After Drew was diagnosed with CF back in 2010, I remember looking at my husband and saying to him, “I don’t know what to say. I don’t know how to tell people.” Now that we are moving, it’s not that I don’t know what to say, but rather that I don’t know how to start or finish.

I met my husband at a bar, or rather on the way to a bar back in 2003. This was before Uber and practically before cell phones when friends or friends of friends would see one another out on a Friday night and all pile into a car, lapping up to make sure everyone fit so that we didn’t have to walk the block to our destination. It wasn’t love at first sight, but intrigue. We connected and then we dated before I broke up with him. He didn’t go away though, and I’m sure glad he didn’t. He was working in Philadelphia, having graduated from NYU with a degree in Actuarial Science - a man who didn’t get as excited about exciting things as I did about non-exciting things, and as a senior in college he was exactly what I was looking for – someone with money to buy my drinks at the bar. When I graduated and moved to New Jersey, he stuck around, taking the train to visit me on the weekends, before we eventually moved in together. I started to commute from Philadelphia to New York every day for work, and he quietly and kindly walked me to the train station every morning and met me back there when I returned home, tired and cranky, every night. We talked about our next adventure, and looked for jobs where we might be able to both live and work in the same city. When he was offered an opportunity in Cincinnati to do marketing research, we decided to embark on that journey and made the move. With no new job in place for myself, I was free to explore the great wide world of…Covington, KY. I cried most days, wanting to go home, but put on a brave face and stood in line at the grocery store doing this thing they did in the Midwest that I was unfamiliar with called “talking to people”. In Philadelphia and New York we just bustle past one another, moving from thing to thing, and this new, slower pace was strange for us. But after a year in Kentucky and my having found myself a job and some new friends, we decided to stay. We bought a house and a year later got married. Our parents thought this was backward but it worked for us. Building a deck as newlyweds would have surely been the beginning of the end, so we did things in reverse at the start.

Then in 2007, we learned that alcohol can be a leading cause of pregnancy. Now married and overjoyed to be expecting, we turned our second of two bedrooms into a nursery, promptly purchased a minivan, and welcomed our precious Ella in June of 2008. I stopped working but never lost the friends that I made during those 3 years. We thought we might return “home” once we had kids, but things were going well with work and we were happy in our neighborhood. Our marriage survived a bathroom remodeling project in 2009 before we decided that we were ready for the suburbs!!  

We moved into our new 4 bedroom home on a Tuesday, then found out on Friday we were expecting again. About 3 weeks later we learned that there were not one, but two babies. We were deep in the middle of a kitchen remodel when exhaustion sunk in. Ella was one and I was enormous. This house in the suburbs felt overwhelming. Drew and Lily were born in March of 2010, and shortly thereafter Ella broke her leg just to make sure we were paying attention.

We were introduced to Cincinnati Children’s that year too. The smell of the NICU isn’t something that ever leaves you. I’ll forever be grateful that we hadn’t left Cincinnati after Ella was born, as Cincinnati was exactly where we were supposed to be when Drew was diagnosed with Cystic Fibrosis. I don’t remember a whole lot from 2010. Or 2011. In 2012, Jake came along and we felt complete. And by complete, I mean completely overwhelmed. My head was just far enough above water to breathe, and drink wine.

We had the great pleasure of worrying about how much our preschool choice would influence our kids future, and regularly consider how our parenting style will be described by them in therapy as adults. All jokes aside, we landed at the perfect place for us. Immaculate Heart of Mary has become our home. All four kids went through preschool, and some of them up to 3^rd grade, and the support and accommodations shown to us by both the staff and our friends has been tremendous in the 8 years that we have been attending. Leaving school is one of the hardest parts of our decisions to go. As our first graders sang “God Bless the Open Road” to their 8^th grade buddies this morning I dissolved into a puddle.

“I set out on a narrow way many years ago
Hoping I would find true love along the broken road
But I got lost a time or two
Wiped my brow and kept pushing through

I couldn’t see how every sign pointed straight to you

That every long lost dream lead me to where you are

Others who broke my heart, they were like northern stars

Pointing me on my way into your loving arms

This much I know is true

That God blessed the broken road

That led me straight to you”

Oh Cincinnati, as much as I never called you home, now that we are moving on I know that God blessed the broken road that led me straight to you. Cue the tears.

Since moving to Cincinnati, we bought our first (and second) house, we got married, we had 4 kids, one with a serious health diagnosis, and have made a billion memories and friends. We’re still married and on the other side of the diagnosis and way more home remodeling projects. People have seen us during our crazy (I say that as though its past tense but it’s very much still present). I’m grateful for neighbors who alerted me to naked wandering toddlers when I had too many to keep track of. I salute friends who showed up with Starbucks and wine, sometimes at the same time, during our darkest days.  We’ve had so many visitors – some who stayed for a while and some who just passed through – and every single one of them has made a mark on our life.

I started my second career here in health advocacy and activism, and I was introduced to a whole new world. The opportunities afforded to me with my colleagues and mentors from Cincinnati Childrens are innumerable. I got to see the world through an entirely different lens and I wouldn’t change any of it. The flexibility of my work has allowed me to share my vision for healthcare improvement with the world while I volunteered as the leader of a girl scout troop or coached a volleyball team in between business trips. Cincinnati pulled out my strength and courage, and carved friends out of the woodwork when I needed them the most.

I met my very best friend here when our paths collided in Cincinnati nearly 11 years ago. She moved from the west around the same time that I had moved from the east and we both landed in this place that moved more slowly. Our shared confusion created comradery that we’ve had to this day. She showed up at 5am to watch Ella when we went to have the twins, and over time graciously adopted my family as her own. She is the Godmother to our youngest and brings junk gifts with her every time she shows up. She left first, about 3 years ago, moving for her husbands job, and I cried and cried. She was the first to know that we made the decision to move a couple of weeks ago, because I needed someone to psych me up before we told the kids and she cheered me on. She’s been our family’s biggest cheerleader, and I wouldn’t know her if it wasn’t for my time in Cincinnati. On this rollercoaster of emotion that is selling a house and buying a house and explaining to kids why we have to go, I was complaining that I was eating nothing but junk and didn’t fit into my jeans anymore. She told me to lean in to the fat. That’s true friendship.

I don’t know what the best or hardest parts of living here have been, but there are lots of memories. Marriage is exciting! Parenting requires wine. Having sick kids is really freaking hard. Going to your friend’s kids funerals is even harder. But is it “living here” that’s handed me these ups and downs or is this just life? I think I’ve learned what it’s like to grow up, and that it’s not easy and it can be a ton of fun. I also don’t know what it means to be “growing up” because it’s not really a thing or a place but a process that leads us home. (Does she mean to heaven? I don’t know, let’s not get sappy.)

I have a friend who either bails me out of every jam I’m in, or laughs with me when I forget to wear shoes to preschool drop off and it’s a non-car line day. I’ve learned where the best karaoke in Anderson Township is on a Tuesday night when a friend pops in to ask if I want to go have a drink. I’m grateful for ATM’s that dispense stamps and McDonald’s who don’t judge when I order milk alone because it’s an easier option than dragging 4 kids into Kroger in the rain. Neighbors have graciously tolerated us playing 90’s hip-hop in our backyard until 2am on an occasional weekend night. I’ve learned of the generosity of my community that shows up every time we need a Girl Scout cookie order or foodbank donation or fundraiser for whatever cause I’ve recently gotten behind. I have friends who take my kids at the drop of a hat when something comes up, and I’ve lost friends who were scared away by this diagnosis that has brought more love and awareness to our lives than I could have ever imagined. I’ve learned that I will never be good at checking the red homework folder, especially not at the end of the school year while trying to sell my house.

In a final quoting of lyrics to describe this bittersweet feeling of our relocation, I was at an event last week where a friend paid tribute to another friend that we had lost too soon with the song “Home” by Philip Philips. It goes “Hold on to me as we go, as we roll  down this unfamiliar road. And although this wave is stringing us along, just know you’re not alone, cause I’m gonna make this place you’re home. Really hoping the “Settle down, it’ll all be clear” part that comes next happens sooner rather than later, but honestly, it just feels like what it’s time to do. Hershey is calling us now, and it’s time to make that place our home.

The CF Learning Network

The Cystic Fibrosis Foundation has been a driving force behind research on therapeutics to increase longevity. It has a well-developed national Care Center Network, a transparent patient data registry, and long-standing quality improvement (QI) infrastructure. There are dozens of initiatives and thousands of people working tirelessly in the fight against this disease. Together, these assets have created a solid foundation on which to build a system to achieve transformative outcomes.

However, recent data suggest that progress has plateaued within the current CF care system:

• The CF mortality rate declined from 2.1 per 100 in 1999 to 1.6 in 2004, but has not improved over the last ten years. 
• The predicted median survival rose steadily from 28.9 years in 1999 to 39.3 years in 2014. But median survival in the US is 11 years less than median survival in Canada (at 50.9 years).
• The rate of pulmonary exacerbations has not changed since 2004. The number of days of treatment required for these exacerbations has increased slightly, with home IV treatment days declining and days in hospital more than making up for that decrease.
• Despite the accomplishments and transparency of the CFF Patient Registry, data are reported at more than a year lag, and the existing technology has not kept pace with advances in registry technology, much of which has the potential for real-time .
• Cost pressures continue to rise both for clinical care and therapeutics.

If you've followed the work I've been doing in any capacity over the past several years, you're likely familiar with the terms "C3N" or "CF Care Model of the Future". We've made it! We're there! We are now, officially, the Cystic Fibrosis Learning Network (supported through a grant from the Cystic Fibrosis Foundation and the James M. Anderson Center for Health Systems Excellence at Cincinnati Children's Hospital). 

We're not the first disease community to do this. The Crohn's & Colitis community became a learning network (read this: ImproveCareNow) in 2007. At the time, clinical research said something like the greatest potential for remission, an outcome measure in this disease community, was roughly 68% given the currently available medications. Once they organized themselves into a Learning Network, sharing across centers, creating a real-time data registry, involving patients and parents in the identification and creation of solutions and tools, they started to grow the number of patients in remission well beyond the amount suggested by clinical research. They now have more than 80% of their population in remission with no new medications, just simply by sharing seamlessly and stealing shamelessly what works best throughout their network; by thoughtfully testing out improvement initiatives using the Institute for Healthcare Improvements Plan - Do - Study - Act cycles; truly, by working together, learning from every interaction and spreading what works. 

There's also the Learning Network for the Heart Community, the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC). For the past 7 years, a group of clinicians, researchers, and parents, from across 60 medical institutions have been collaborating to ensure that families of children, who receive a diagnosis of Hypoplastic Left Heart Syndrom (HLHS), and other univentricular hearts, have hope. Together, NPC-QIC and Sisters by Heart, a parent partner organization, have harnessed the power of quality improvement tools and methods to improve the health outcomes for these patients, promote transparency of outcomes data, and enhance communication between clinicians and parents. To date, patients have a 95% chance of surviving the interstage period, 77% of whom have satisfactory growth during the interstage period. Read their one pager, its fascinating - https://npcqic.org/sites/default/files/NPCQIC_1Pager_2016_11_15.pdf

There are more than just these two Learning Networks doing fascinating work. In fact, there are 5 well-established learning networks and 6 emerging learning networks, one of which is the CF Learning Network. 

Thirteen CF Programs were recruited for the first wave of the CF Learning Network in July of 2016 and each team includes at least one parent or person with CF on their team to collaborate on this work. Additionally, we have a team of Community Innovators, parents and people with CF who are organizing their improvement ideas and using QI methodology to grow the number of community members who are equipped and enabled with the skills they need to create and sustain strong care partnerships. We expect approximately 15 more teams will be joining the our network for the second phase of our pilot in the summer of 2017. In short, we are a group of patients, parents, clinicians and researchers working collaboratively to reduce the unintended variation in CF Care and ultimately improve outcomes by identifying and testing solutions and tools that have the potential to improve health and care in the CF Community, learning from every interaction and sharing what we've learned. Want to know if your center is participating? Ask them! Want to be a part of this? Join us! Email me ([email protected]) and I'll send you the information for our monthly calls. Your center does not have to be participating for you to join us. This is about the community coming together, bringing everyone's good ideas and thinking about the impact that they have on the outcomes that are most important to the community, collectively. 

Our aim is to achieve outcomes that are not possible through the current system of CF Care. We're working to take the guess-work out of CF Care. We expect that, by December 2018, the pilot of our CF Learning Network will have demonstrated progress toward improving outcomes and established an infrastructure for ongoing collaborative learning so that your health outcomes aren't dependent on your zip code or what your doctor happens to know.

During the design phase we worked with all stakeholders in the CF Community to dream up the perfect system for CF care and then thought about what we would need to change in order to achieve that - What are we trying to change? How will we know that a change is an improvement? What changes do we need to make to see those improvements?

Check out this vision - what if we could create a system for CF care that achieved this, simply by working together smarter, in the Learning Health System Model. This gives me so much hope!

The CF Learning Network serves as an engine for innovation that designs, tests, pilots and implements innovative ideas that have the potential to change outcomes. Together this community is working to create an immensely different health system that improves health and quality of life for people living with cystic fibrosis.

This isn't a dream anymore! It's really happening, and I can't wait to show the world what we can do!

I'd love to...

It's been a while since I've found the time to write a blog post. I'm writing for Eli Lilly now, and you can check out some of those posts here --->  https://lillypad.lilly.com/?auth=76 I find a lot of the content I'm sharing over there to be stuff that I would also share on here, so no sense in duplicating!

We decorated for Christmas the day after Thanksgiving, marking the start of my most favorite holiday and time of the year. Christmas music is being piped throughout the house (and car and headphones) and reflections of the past year have inevitably begun. We had a tough go for the second half of this year, and we're sort of still in it. If you recall, Drew lost a significant amount of his lung function over the summer before we identified the culprit - a fungal infection. We treated him with anti-fungal medication and he thankfully improved until there was a second unexpected drop near the start of the school year. He had gotten back up to 91, and then in September dropped back down to 78. We had discussions about what might be causing it and what we should do to treat him, and decided to temporarily stay the course on the anti-fungal medication until he reaches and maintains a baseline on it, giving us confidence that it is both working and that the infection is under control. You may recall (or maybe not) that he had a fungal infection last year around this time. We started the anti-fungals for 3mo and he improved, so we stopped the treatment, and then by June he had lost 30% of his lung function, maybe not so mysteriously after all. I suggested that perhaps we hadn't had the infection under control as we had originally thought and, like fungus does, it slowly crept back wreaking silent havoc. I want to make sure that we are confident that things are under control this time before we change course, as a newer article suggests that fungus can become quite resistant if treated, if the medications used to treat it aren't used properly. The options seem to be, per this article anyway, treat the fungus and increase its adaptive skills, or not treat it and allow the pathogen to settle in the lungs. Not treating wasn't an option for us because of the impact that it was having on his lung function.

It's complicated, this disease. We seem to have the bacterial load in his lungs under control. Most research shows that bacterial exacerbations are a leading cause of lung function decline and lung damage in CF. But once we finally got the achromobacter under control with years of treatment on inhaled antibiotics and steroids, we seem to have traded it for a fungal infection. Did we cause the fungal infection? Perhaps we did, there's not really a good way to say. Is it better to have a bacterial infection or a fungal infection? I would probably argue that a fungal infection is *better* given that these is little research that shows the impact of a fungal infection on the progression of disease. I do not know if there is evidence to support the contrary, or just lack of research on this altogether. Either way, I'm interested to learn more and hope that the CFF will continue to study this.

He's got a cold now, coughing in his sleep and when he's running around and playing. We've added extra treatments which has him crankier than ever, but it's necessary. We've been going in to clinic for PFT's every two weeks and his numbers are remaining pretty consistent - 78, 81, 82 - but I'm not so sure how things will look with this new cold, perhaps something he picked up when we were in clinic for one of those appointments. Despite their best infection control practices - recently even declaring that the spread of infection among patients in our clinic had come to a halt with new infection control practices, which is great news - going into the hospital remains one of the most dangerous places for Drew to be. There are lots of sick people coming here for care, and even though we wear a mask and don't touch anything, he always seems to catch something when we have to come here. We should be able to use home spirometers to monitor our lung function. We should be able to track our weight from home, and other symptoms, and communicate what we learn with our care team, eliminating the need for unnecessary visits, saving everyone time and money, and perhaps even improving health. Machine learning can enable this, and should. While our center was using the Orchestra platform (which is no longer), we did start to see a longitudinal view of patients health shared with the care team. We did improve inter-visit communication, and intervention at more appropriate times rather than just when we happened to have a visit scheduled. It didn't reduce the number of times that we *needed* to come into clinic but it could have. I highlight the word *needed* as this is an evidence based medicine metric, a guideline put forth by the CFF for all patients, and embraced by all clinicians, regardless of whether its the right thing for the patient. The care teams aren't interested in reducing clinic visits below the required 4x a year. Or maybe they are interested but just can't becasue the CFF uses this as an accreditiation metric, requiring them to do this or find a way to improve rather than working to understand, from patients, why they aren't coming in 4x/yr and how we might work together to optimize care and outcomes according to the patient priorities. Hopefully our learning network will fix this. I digress.

I hope he's well for the holidays. I got this crazy idea to take my family to NYC to see some cousins the week before Christmas. What crazy person wouldn't want to drive 24hrs over 3 days to spend a night in a matchbox sized hotel room to see family and New York City at Christmastime?! I'm sure traffic will be delightful. At least we can stream Christmas music in the car!

I hope he feels well enough to open gifts with excitement and delight on Christmas morning, and that we don't have to pull him away from new toys to do extra treatments. I'd love to, for just one day, forget all of the medical stuff. I'd love to wake up and not have a schedule. I'd love to go out to dinner and not worry about hand sanitizer and enzymes. I'd love for him to run around outside, maybe in the snow, and not come back inside having a coughing fit, and rather than breathing treatments, have hot chocolate while all of the clothes defrost into a puddle in my foyer.

I've declined antibiotics for him since September because I don't think he needs them. Maybe I'm wrong, but I'm trusting my gut this time. We will go there if we need to, but for right now, we will do our treatment and take our medicine and listen to our Christmas music and enjoy this holiday as much as we can.