Friday, June 7, 2013

We are equals...and a Drew update :)

About two years ago, I became the State Advocacy Chair for the Ohio chapter of the Cystic Fibrosis I remember the first meeting that I had. It was at Jean Schmidt's office and Drew's doctor came with me. We nervously sat in the lobby discussing out lack of political knowledge and our anxiety over how we would answer certain questions had she asked them. We ended up meeting with Rep. Schmidt's chief of staff, who coincidentally, had a friend whose baby was recently diagnosed with Cystic Fibrosis. The conversation just flowed. That meeting earned us another meeting with Rep. Schmidt  herself which went just as well, if not better, than our first meeting. That year I went on to meet with representatives from Rob Portman's office, John Boehner's office, and Mitch McConnell's office. Not a ton of time was spent prepping for these meetings because I wasn't learning something new that I was sharing with them, but rather sharing my story, the story of Drew and how we fight for him by raising money and awareness of this disease. 

When I look back on those early meetings, I remember feeling almost intimidated by the power that some of these folks held...until I met them. Then I saw us as equals. Elected officials are put into place to represent me. They need to hear about what I believe in and how their decisions effect me. Similarly with healthcare, the doctor can't treat me without knowing anything about it. They need to know how I'm feeling, my history, my symptoms, my priorities. To do their jobs well, I need to be a part of their team. The walls must come down we must be partners, working together for the betterment of all. 

I'm going to a healthcare conference next week called Creating and Sustaining Collaborative Networks in Pediatrics and I've been asked to share some of my thoughts and experiences with such networks as well as areas for improvement. I've learned a little bit about the audience and what some of the other parent speakers are hoping to share, and I'm still struggling a bit with what my message will be. I think the essence of these networks is making patients and families equal players, and for that reason I want to talk about the value of letting patients help. I think a lot of these people get that already though. So what else can I tell them? What can they hear from me that will be eye opening and leave them thinking about me and thinking about taking action, including patients. I've got some thinking to do over the next few days.

I haven't talked much on here about Drew lately and, with it being a blog on him and all, I thought I'd give some updates. Drew, who is 3 now, has had an on again off again cough since about January but wasn't culturing anything. We treated a few times with oral antibiotics and he would seem to improve and then the cough would come back. In early March, he cultured achromobacter. We treated with two weeks of IVs (tobramycin and meropenum) and his cough seemed to improve but unfortunately after completion he was still culturing it. We decided to try 30 days on inhaled Colistin next. For the first 15 days on Colistin, his cough had decreased but then it slowly crept back. He finished Colistin last Wednesday and by that point the cough had come back significantly and he was in clinic for a sick visit the day after completion. We did a culture and put him on Omnicef and there was an immediate improvement, taking his cough back to almost non-existant for 4-5 days, but once again, it has come back. 

I met with his doctor yesterday and we are assuming that he is colonized with achromobacter. It has been hard to get a true culture since he had just gone off the Colistin the day before he was in for a sick visit, and now he is on an antibiotic again. We're going to do a hi-res CT as he's had one of these before and could provide some insight into what kind of damage, if any, is occurring. 

What I'm struggling with is that even if he is colonized with achromobacter, it is not a good situation when he has to cycle inhaled and oral antibiotics constantly, not even 30 on/30 off,  just to get to his baseline. I'm not ready to accept that this increased, junky cough and frequent de-sating is his new baseline. I believe that he will benefit in some capacity from the Kalydeco + 770 combo, but I need to keep him well until that is available. And he looks perfectly fine. To see him, you wouldn't have a clue that anything was even wrong. 

So our next step is to have a high-res CT done to see if this cough is just a cough or if its mucus really causing some lung damage, bronchiectesis. I was hoping to have that done before we head east for a couple of weeks but I don't know if it's actually going to happen or not. I will keep the blog up to date with everything that's going on!

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