Sunday, September 14, 2014

Pushing the train

My life is not like your life. I doubt that many of you wake up everyday to the reality that you might outlive one of your children. We've been spending 4 hours a day doing breathing treatments because Drew is sick. We spent 4 hours a day every single day since last Saturday doing breathing treatments and chest percussion to bang out the mucus that is clogging Drew's airways. I emailed his doctor to give my diagnosis, and after some back and forth, and a shared video of his cough and breathing sounds, we agreed on a treatment plan. I went to CVS for prescriptions 3 times on Friday. I had to tell a 4yr old that he couldn't go to school two days this week because he needed to do his "breathies". It's the second week of school, and the weight of his disappointment was heavier to hold than the worry about his declining health.

The weather finally changed in Cincinnati, and while most kids were at the park or outside playing with friends, we were still inside doing breathing treatments. We walk this fine line of needing rest and needing exercise. The fear of the new respiratory virus in the community has kept us isolated. For many, it would just be a bad cold. For us, it means a likely hospitalization and who knows what else. 

We are overdue for our quarterly check up, and my non-compliance to the protocol has been noted. But let me try to articulate why I haven't taken Drew into clinic. He has a multi-drug resistant bacteria in his lungs. That is the reason that we spend so much time doing breathing treatments. These aren't optional treatments. He needs this medication to keep him alive. I believe that he got that bacteria from the hospital. And so while the risk of taking him into clinic for a well visit may be low, given the new infection control protocols and the fact that he wears a mask and grabs the first appointment on a Monday morning when there has been no CF traffic in the office for a few days, I struggle. I don't want to put his health at risk either way, by taking him or by not. But the implications that the acquisition of that one bacteria has had on our life has been profound. Even when Drew is well, he spends 2 weeks at a time doing an hour and a half of treatments a day, and then the next two weeks we add an inhaled antibiotic which takes our treatment time up to 3 hours day. When you add up those 3 hours, that is literally an entire day of every week that we spend hooked up to machines trying to keep him healthy. And then there's the impact that that has on the rest of our world! Marker on the walls? Mom and dad must have been busy with Drew. Forgotten homework? A "quick" call from the insurance company turned into something longer and even less valuable than agreed up when we picked up the phone and now there is a disappointed 6yo who got tired of waiting to show me her latest artwork. Playdates? Anyone sick? Our kids can't come. Exhaustion? An 8am meeting means we are up for the day by 6 so that we can get all of his treatments done, kids fed, lunches packed, babysitters briefed, and out the door on time. Schedules are rearranged around when treatments need to be done, and we try to do treatments around the very few activities that we are actually involved with. I wish we could be in soccer and dance and gymnastics and swimming, but remember we only get 6 days a week as cystic fibrosis has stolen our 7th. Those are the implications.

I worry about our other kids. Luckily, no one has known our life any differently as they are all so young and this is such a routine for us, and our people are sort of go-with-the-flow, but friendships are made and confidence is gained in some of those extracurricular activities that we just can't seem to find time for. We'd love to meet friends for dinner, but we never announce our plans prior to them taking place so as to avoid the disappointment that would inevitably come when we receive a text that one of our dinner guests has a runny nose and we have to cancel. It's exhausting to make it up as we go, changing plans on the fly and turning a relaxing night out with friends into a homemade pizza and movie night, complete with popcorn and sleeping bags. We, too, would like a break, where we get to socialize with friends over a beer while the kids act like maniacs in a restaurant where we will leave a big tip to thank them for allowing us to break free for a few hours. I'd just like to watch the news one night, or go to bed early and read a book. But before any of that can happen, we need to clean up. We have medical equipment that requires nightly sterilizing. It would free up my time if my pharmacy could work with my doctor to coordinate when pre-approvals would be needed, or to "God forbid" make an exception for someone who has a genetic disease that does not have a cure. For the foreseeable future, we will need these medications, and it would be nice if it was acknowledged that this is not a way that I care to spend my time. 

I worry about Drew's health when we need to replace a piece of drywall where a toilet leaked. While some moisture in the wall might not be harmful to most of us, mold could cause some serious complications for Drew. And then there's the super fine particles of drywall dust. As contained as we may think we are keeping them, I know that they're flying through our house. I hope that they don't cause any trouble. Traveling is another wild card. We are hoping to spend time with family next weekend in Chicago, a trip that has been planned for many months. Will the exhaustion of a long but no doubt fun weekend give way to another exacerbation? Is that worth it? 

I noticed the other day when we were leaving school the look that we had gotten from a group of teachers who heard  Drew coughing to the point  where he almost threw up. Yes, three seconds prior he was running around and laughing and playing, and then his little lungs couldn't keep up. That's the blessing and the curse of this wretched disease; he looks perfectly normal, but no one realizes what it takes to keep him that way. He hadn't been to school that day, but I had to bring him with me for pick up. I know a judging look, as I've given them before. I think people often judge that which they don't understand. These will be his teachers next year. Will I be able to help them understand? 

I'm going to quote a piece from Kelle Hampton's blog about fitting square pegs into round holes, because I feel a lot like a square peg in a world full of round holes.
Remember the movie Apollo 13? The astronauts’ lives literally depended on fitting a square peg in a round hole. Technically speaking, the lunar module’s round receptacles didn’t fit the command module’s square filters for carbon dioxide disposal, and CO2 levels were near toxic. There’s this scene where these NASA engineers go into a room, dump everything to which the astronauts have access on the table, and are given the challenge of using what’s on the table to transform the round receptacle to fit the square filter. It’s an impossible task, but these people are solution-based thinkers and their friends' lives are at stake. And they figured it outThey walked out victoriously an hour later carrying a contraption that was once a non-existent solution. They used duct tape and cardboard and creativity and determination and never once said “we can’t do this.” They did it because they had to. And as if fitting a square peg into a round hole wasn’t problem enough, you know what else happened on Apollo 13? They had to conserve power on the shuttle to get it home, so they cut all their resources down. No cabin heaters, no instrument display, no guidance computer, no ground control. No map of where to go and no one to tell them how to do it. Sound familiar? It’s called parenting. 
This is where I question whether all that I'm feeling is really because of cystic fibrosis. I can't differentiate between parenting and care giving because both were new to me within a relatively short period of time, and the role is all I've ever really know. I'm caring for my kids, sick and health, happy and sad. I don't deserve a badge of honor. I made a conscious decision to have children and it is my responsibility and honor to raiser them. Are others as overwhelmed as I am by our goals and ambitions and the lack of time to complete them? Do families not pressed with a chronic illness worry about what influences or shortcomings are shaping their kids? Am I the only one who feel like a square peg?

I know that I'm not the only one who feels this way. I know that because of the many wonderful people that I had the privilege to spend last weekend with at a conference called Medicine X at Stanford University. Many of them are also dealing with different health conditions. I also met many who were not. I met the people who weren't given nearly enough credit for being there - the care providers. It seems there could be no more two different groups that could collide in such harmony. The doctors who chose this path, spending years and years and lots of money and energy, making personal sacrifices just so that they could help others, and the patients, who never dreamed of being a part of the healthcare system and who want out of it worse than any of them can express. It's the humble awareness of a shared humanity that brought us all together, and was expressed so eloqently in a quote shared by Pam Ressler during one of the most captivating panels at Medicine X: "Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Thank you to the clinicians, for being there and for caring enough about the patients to dedicate your time and energy into improving the system. 

Before I end this ramble, I want you to try to put into perspective what it is that I'm trying to do in healthcare. I want you to imagine that I'm pushing a train. It's my train, and I've got two hands on it and I'm behind it, pushing it. And everyone that sees me, or even hears about me, will probably have something to say about me and my train. "Wow, that's amazing that she can push that train!", or, "I bet the train would go faster if she asked others to help her", or, "She shouldn't be wearing that to push her train", or, "What a fool for thinking she will ever get anywhere pushing that train." But what if the only way that you were allowed to talk about my train was if your hands were also on my train. And it's not about moving faster, though that could happen. It's about moving forward. I need to keep moving forward. I need to continue toward my goal, and when people say "Wait! We need to stop and make a plan!", or, "We need to have a meeting about this before we can move forward", I say no. I need to keep moving forward. Stopping does nothing but halt my forward progress, and once I stop, it takes a lot more energy to get my train going again. I am going to keep pushing my train and I invite everyone to join me, because I refuse to let my son become the victim of a broken system.

We, quite unfortunately, are immersed in the kingdom of the sick. I think that my mission in life is to launch our many experiences out into the world, so that I can both help others and in turn, help myself. 

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