Sunday, August 25, 2013

Not out of obligation, but out of love

Drew still has achromobacter. We just got the test results a few hours ago. We'd spent more or less all summer on a series of inhaled antibiotics, spending 3-4 hours every day, at home and on vacations, to try to eradicate this antibiotic resistant beast, but to no avail. I guess I had accepted that we probably we never really going to get rid of it, but I had still hoped that it would happen. We have another clinic appointment tomorrow morning to figure out what's next, but I think [read: know] that he will be considered colonized with Achromobacter and we will start to cycle inhaled antibiotics. If we have to live with this, I hope that we can at least keep it suppressed to the point that it's not causing any problems, seen or unseen.

Preschool starts on Wednesday. We're going in "healthy" and I'm not looking forward to the chaos that early fall will bring with exposure to 18 three year olds and all the germs that accompany them. I met with Drew's teachers last week and am happy that we have chosen to send him where we did. I am hopeful that they will do everything that they can to keep this disease invisible to him and help him to learn and grow the way that I hope for him to. I think he's going to love preschool, and if he gets sick and has to stay home, I think it's going to be a major bummer. There isn't much that we keep Drew from doing, not much that the CF prevents him from participating in. But man, those times when he's got his heart set on something, even something simple or insignificant, and we have to stop him because he needs a treatment, or needs to be hooked up to an IV, he gets so bummed. Those are the times that my heart hurts. But then I curse CF and get all fiery and go trying to change the world (it's happening, more on that later).

The other [selfish] reason that I'm hoping Drew's health remains good is because I'm attending two conferences this fall and leaving the family in the good care of my husband. Not that he wouldn't be capable of taking care of Drew if he were to get sick, but Drew getting sick turns this family on it's head. With 4 young kids, some in school, some in activities, all needing care at all times, it's a nightmare trying to keep things in check when one of us has to be in the hospital with Drew or even at home managing administration of IV medications on top of all that we already manage in a day. 

Speaking of conferences, I was invited to speak at Stanford Medicine X ! I'm going to be on a panel about what it means to be a "patient" in 2013. I don't know if I ever announced it on here, but the CF Foundation is moving forward with a partnership with the C3N project at Cincinnati Childrens. (Yay!) I talked to people and shared my story and shared my vision and started tracking and started engaging in Drew's health at a different level and the results have been outstanding, and some prominent people in the healthcare world have caught wind of this and that's how I got the invite. The stuff that I'm working on at Children's isn't rocket science. It's engaging healthcare professionals in new ways, and sharing ideas about things that could improve health and care, not just in Cystic Fibrosis, but in chronic diseases all around. I'm showing people that everyone has expertise, that I can learn from them and that they can learn from me. And at Stanford at the end of September, I'm going to learn and to share with a ton of great people. I'm honored, excited, and just a little bit nervous to be in the presence of such an incredible group of people. 

The other conference I'm going to is the North American CF Conference in Salt Lake City in October. I'm totally pumped about that one too. While many of the other participants there (docs, other clinicians, researchers) might not feel the same way that I do, I'm there to learn but also to share and hope that they will be able to learn something from me too. I won't have a podium or an audience at that conference (not yet!), but I will talk to people about my vision for a better future and how we can all work together to get there. 
Another exciting thing that happened this summer is that I was interviewed for a piece on NPR about the "Quantified Self" movement (you can listen by clicking here - the whole thing is really awesome and I highly recommend listening if you have the time, but my interview starts around the 24 min mark). 

On Friday night, we went to a CF Fundraiser that another family that has a child with CF was hosting in Northern Kentucky. I'd never met them before, just heard about their event through Facebook and knew of another family that might be attending. We decided to go, both to support the family and the CF Foundation through the fundraiser, but also to show them that we care, we get it, we've been in their shoes, we know how it feels day in and day out, always hoping for the best, sometimes dealing with the worst. It ended up being a really great night, in terms of money raised for CF and the company that we had for the evening. 

Our Doin' It For Drew Oktoberfest Fundraiser is coming up on September 21 (all are invited, bring your friends!) and as we go into another fundraiser, I trudge through realizing the importance of these funds that we raise, but hesitant to ask the same people for another dollar, more of their time, more of their energy. At the event on Saturday night, they had programs and I have to share the message that they wrote on the back because I couldn't have said it better myself. It may not have been written by me, but the message that I share below comes from my heart. 
"There's little we can say to show our gratitude for your generosity & support. There have even been moments we've felt guilt for all that has come our way; that we were asking too much or putting those around us in a place of obligation. But then we realized something that deep sown we had known all along. That God had been preparing us for this our entire lives, and that through our [son] we would learn of you, our "silent army" that has been surrounding us all along". 
Thanks to all of you, our family, our friends, complete strangers who we've been touched by our story, we've raised $25,000. We hope and pray that you will continue to fight with us until CF is a thing of the past!

Wednesday, August 7, 2013


I've been reading this great book called Unaccountable: What Hospitals Won't Tell You and How Transparency Can Revolutionize Health Care. It's really good, and a lot of what's in it is stuff I've been working to change. One of my favorite quotes from the book is this: "In short, data transparency, properly weighted, would empower patients to make informed decisions about where they should spend their health care dollar. If we had more of it, the accountability visited on hospitals would revolutionize the quality of medical care in every city in America, dramatically reshaping our health care landscape." I do believe that to be true. 

We just spent a week in Michigan with my husbands family. It was so nice to get away for a few days. Drew has been doing pretty good lately, knock on wood. We're about to finish up 60 days of inhaled antibiotics. I have little hope that the achromobacter will ever be eradicated, but it's been nice to be cough free and generally healthy. What I suspect will happen is that he will continue to culture the achromobacter and we will cycle 30 days on/off of an inhaled antibiotic. I just hope, so so much, that the 30 days off won't be symptomatic and causing him harm. I guess only time will tell. We finish up this Friday and will do a culture next week. He sees the doctor again two days before he starts school so hopefully we will at least get a clean bill of health to start out the year.

School is definitely been on my mind. I'm trying not to worry to much. I know that he will be great, that he will love it and enjoy being around others and learning and playing and just being away from me for a bit, but I worry that he's going to get sick. No one takes care of him like I do. No one follows him around with hand sanitizer to make sure his hands are clean before he eats and drinks or after he's been outside playing like I do. No but me makes sure that the kid next to us at storytime isn't coughing and sneezing up a storm. We have never missed enzymes at any meal or snack or drink ever. And now I have to give some of that responsibility over to Drew and to his teachers, and I'm definitely stressin'. I know it will all work out, but it's just a change and sometimes change can be hard.

I wish I had more time to write on the blog. Summer has been great, but very very busy. When school starts in just a couple of weeks, I'm hopeful that I can find some more time to jot down more of the things I'm thinking about and working on!