Tuesday, January 8, 2013

I Got Through!

We are living in isolation right now. I'm so afraid that someone is gonna catch something and then it will spread like wildfire around this house, leaving us sick, grumpy and tired, and if we're not careful, put one of us in the hospital. Drew managed to dodge the bug that we all caught a few weeks ago, but had he gotten it there is a good chance that he would have become dehydrated and put in the hospital. I want no parts of the hospital right now. I don't want to go in for a well check or to pick something up or for anything. I am trying to avoid this horrible flu season at every cost. Diane Sawyer told me that there are 5 weeks left in the flu season so we will remain in isolation and hopefully not make each other totally nuts.

So I reached out to CVS Caremark again last week and hadn't heard anything back. They either aren't taking my offer to work together on a solution seriously, or just don't feel like bothering with me. Then today, I was checking out a CF Mom's Facebook page and there was a post from another aggravated mom about her experiences with CVS Caremark. And below that there were a bunch of replies, all sharing my sentiments. So I re-tweeted CVS Caremark that I wasn't the only one having issue with their service and guess what? I got a response. They want to talk. Last time, they were very helpful in resolving my immediate issue, but the next time I had to reorder I had the exact same issues. And apparently I'm not alone! I don't want to talk to the customer service manager in the call center. I want to talk to their VP of Quality Improvement, if they have one. Or someone who puts all of these rules in place with the "typical" customer in mind, not realizing that someone with a chronic condition is anything but typical. I hope that I can get through to the right person. I am completely aware that calling them just to complain is not going to get anyone anywhere. I want to talk about the problem and figure out a way to work together to solve it. I want the conversation that I have with them to be a productive one. I'll keep you posted on how that call goes! This is more evidence that speaking up and advocating can make a difference!

On that note, the CFF's annual March on the Hill is coming up in a couple of weeks where advocates meet with members of Congress in their DC offices to spread the word about CF and the Foundation's policy agenda and to ask for their support in preserving funding for programs that would affect us. Guess whose going this year???? That's right! We're heading back to my parents in PA for a long weekend and Martin and I are going down to DC for the March on the Hill and the Volunteer Leadership Conference that we were invited to attend. I'm so excited to meet some of the other State Advocacy Chairs at the March on the Hill and to meet some of the incredible Foundation volunteers at the leadership conference and learn more about what they do and how they do it. Its such an honor to have been invited to attend!

Switching directions completely, we've had some mild success in getting Drew to eat. We've tried charts and praise and punishment fun eating tools (thanks grandma!) and just about everything in between, and I think that the answer for us has been twofold. First, its giving him what he wants. Right now he happens to be into pancakes, so we give him pancakes and mix in ground up pecans so he doesn't know they're there and then add a ton of butter and syrup and we have ourselves a nice little super high calorie breakfast. Add to that 8oz of half n half with chocolate syrup and we're in business. His teeth are going to rot out of his head, but at least he will be gaining some weight! Other things he likes this week are grapes and applesauce. I always wash the fruit before I give it to the kids, so what he thinks is just some water on the grapes is actually vegetable oil. Same thing with his applesauce - 1 cup of applesauce + 2tbsp of veggie oil = 28g of fat. He will sometimes eat goldfish crackers or honey nut cheerios, so I have sauteed them in vegetable oil and he has no clue. Vegetable oil is our friend. The other thing that seems to work is to let him eat when he wants to eat. The more we were pushing it the less he wanted to eat. He knew he was getting our attention by doing it and it was a gigantic fight every night. So if he doesn't want to eat, he just sits at the table and we ignore him and he sits happily, usually drinking he H'n'H, and we all go about our dinner. It doesn't go like this every night, but at least we're making some steps in the right direction.

When he was just a baby, he had this puking thing going on for a while, long enough so that they had to admit him because they didn't know what was going on and feared that he would become dehydrated. They ended up diagnosing it as Post Infectious Gasteroenteropathy (or a stomach bug) and his bowels [which had undergone several surgeries] just weren't able to tolerate anything. Anyway, when he was in the hospital there, they did this stomach emptying study that showed that he had a little bit of a slow stomach emptying. At the time, it was nothing that would have been causing the puking that was going on, but now that he doesn't ever really seem to want to eat, I'm beginning to wonder if its just because he doesn't digest food that quickly and truly just isn't hungry. Or maybe its what he's eating. I know that he needs it, but good Lord if I ate as much fat and oil as he does in a day, I certainly would not be feeling terrific. So who knows. At least he's eating something, so I'm happy about that. I try not to worry to much about him when the docs tell me not to, but its hard not to worry. I just need to him stay as healthy as possible for as long as possible, until Vertex or Pfizer figures this thing out and makes the cure in the form of a pill. We're close!

Only a couple of weeks until our big meeting with the CFF about the C3N for CF! Below is our project overview. I think (read: hope) that this will change the way we manage CF and believe that this will improve outcomes. Read it! Watch it in action by clicking here (start watching around the 17min mark to get the guts of the presentation). Join us in perfecting this. We need to leverage the expertise of parents, patients and physicians. And I secretly publicly wish that Ginger.io could or will be a part of this.  I can't wait for this meeting!

Chronic illness kills too many and costs too much. Reducing this burden is possible, yet within our current health care system, Americans receive about 50% of indicated care and patients follow doctors’ orders about as often. What if there was a way to create a vastly better chronic illness care system by harnessing the inherent motivation and collective intelligence of patients and clinicians? What if this system allowed patients and physicians to share information freely, collaborate to solve important problems, and use their collective creativity and expertise to act in ways that improve health? A system for transforming chronic care is possible – we intend to build it by designing, prototyping, optimizing, and evaluating a Collaborative Chronic Care Network (C3N) for pediatric cystic fibrosis (CF).

The C3N is modeled after collaborative innovation networks (COINs), virtual teams of self-motivated individuals with a collective vision, enabled by the Web to achieve a common goal by sharing ideas, information, and work. COINs are not new – collective intelligence has existed at least since humans learned to hunt in groups. The internet, though, has allowed COINs to deliver their full potential, with Wikipedia, Linux, and the World Wide Web Consortium itself as prominent examples. COINs are, however, new to chronic illness care and, while many doctors and patients use the Web to search for and find health information, existing health-related social networks separate patients from providers, despite the fact that patient-provider interaction is key to chronic illness care.

Joining patients, parents and providers (physicians and other clinicians) in a shared collaborative network is a radically innovative approach in health care. It challenges the dominant chronic illness care system or paradigm, which views patients as objects on which to intervene, structures care around episodic one-to-one patient-physician interactions, and assumes an inherent power differential based on knowledge. The C3N will challenge the paradigm by engaging patients and their caregivers as co-equals, by making interaction continuous through asynchronous one-to-one and one-to-many communication, and by leveling the knowledge gradient. Moreover, while many social learning theories yield simple mechanistic formulas for behavior change, a C3N acknowledges the inherently complex nature of human behavior and provides the means to describe and understand emergent behaviors.

A C3N for pediatric inflammatory bowel disease (IBD; Crohn’s Disease and ulcerative colitis) has been designed and is currently being tested within the ImproveCareNow Network, an active, open learning health network that uses collaboration and data to drive improvements in the care and health of all kids with IBD. Currently, ImproveCareNow now has 49 participating centers in 27 states and London. These 49 centers have 440 pediatric gastroenterologists and nearly 15,000 IBD patients. The C3N for IBD has designed over a dozen innovative solutions for IBD patients, caregivers, and clinicians that include mobile health applications, an individualized treatment design and evaluation platform, tools to increase engagement during the clinical encounter, and community leadership opportunities, among others. The global aim of this work is to create and implement a C3N for CF. 

No comments:

Post a Comment