We had a great time in Philadelphia this summer. Our 3 week trip turned into a 5 week trip, one week of which was spent at Children's Hospital of Philadelphia (CHOP). Drew got sick just as our third week in PA started with something of a stomach bug. It ended up dehydrating him pretty severely to the point of causing a pulmonary exacerbation that landed him on the CF floor of CHOP for a week. We were able to get a PICC line and administer the rest of the two week antibiotic course from my parents, but it did keep us in town a little longer than expected. There are worse places to be stuck than at the grandparents house!
During that little hospital stay, we were supposed to be packing up to make a drive up to Connecticut to have Jake Baptized. Those plans had to change when we had to stay close to home with the PICC line. Very fortunately, we have an awesome family who coordinated to have the Baptism moved to PA and our CT clan was able to make the trip down for the event. Check the Baptism off the list! All in all the trip was really great. While brought to town for unfortunately circumstances, Martin was able to visit with some of our friends that I had seen earlier in our trip. We really got to see so many old friends and family that we don't see very often. It was nice to be back, but alas it was nice to return home as well.
Over the past couple of weeks, I've been working closely with some members of the CF team on some quality improvement projects. One of them, as I mentioned before, is integrating the CF community into the C3N. I am really excited about this project because of the potential it holds for improving outcomes in the CF community. I have actually branched off from the PIQI (Parent Involvement in Quality Improvement) group and partnered with the C3N community as the lead on the integration into CF, and have gained a resource from the C3N whose time will be specifically spent on CF. We are now going to start working our how to present this to the CF community and get people interested. Its so interesting and I really love the time I'm spending on it.
Its "Make Every Breath Count" time again, and I could use any and all help people are willing to offer. I have one meeting already set up with Kentucky Senator Mitch McConnell in a couple of weeks. I've been calling and emailed all kinds of decision makers in my local area to try to share our story and the message of the Cystic Fibrosis Foundation. The support of families affected by Cystic Fibrosis is truly the most effective way to get our Congress to make decisions that will help our kids. You don't have to know a lot about politics to speak from your heart and share your story. These people are in office to represent us, to be our voice in the government. How will they know what's important to us if we don't tell them? We are asking them this year to support increased funding to the Food & Drug Administration (FDA) and to the National Institute of Health (NIH). The funding increases that they voted through last year upon our urging helped to push Kalydeco through the FDA approval process in only 3 months, "an example of how a collaborative, well-informed process can move life-saving therapies to market with greater efficiency". THREE MONTHS!! That's incredible! Increased funding would help to ensure that new treatments for serious diseases like cystic fibrosis are reviewed and approved effectively, efficiently, and without delay. The increased funding for the NIH that we were requesting support of last year led to the development of the National Center for Advancing Translational Sciences. NCATS(which is part of the National Institutes of Health), is especially important to people with CF because it seeks innovative ways to remove obstacles to translating basic scientific discoveries into much-needed treatments. All of these are reasons that our decision makers need to hear your voice. I'm as busy as the next guy, but I find the time to do what's really important.
I got an incredible email today:
Hello Erin -My name is ____ and I am writing to you on behalf of Genentech, a member of the Roche Group.We are interested in learning more about your blog and any insights you may want to share with us on how to connect better with those in the CF community. Genentech is extremely committed to building relationships with people affected by CF. We would also love to share with you some of the programs Genentech has developed for patients and their families and learn ways we may be able to improve these programs.If you could let us know your availability so that we could set up some time to chat over the phone that would be great.Let us know if you have any questions. We look forward to hearing from you soon.
Are you kidding me?! This is like a dream come true! This is like exactly what I want to happen - collaboration between patients and doctors and families and drug companies and whoever else wants to be involved to make things better, to truly improve outcomes. This is exactly what we are working toward with the C3N! If you're reading this and affected by CF in any capacity and could do me a favor and join this blog, I want to see who is reading this, who I'm reaching as just one person. I'm trying to learn how to reach more people. Not like me personally, but me as a member of the CF community - how do we get our information, be it medical, social, emotional, whatever. How can we take all of that information and use it for the good? This is all going to come together, I know it is. It might take some time, and being the ever-so-patient person that I am that might be hard, but it will happen. I will see this through to fruition. I'm meeting with Genetech on the 29th, right after my meeting with Senator McConnell. Wish me luck!
Finally, we had a clinic appointment this morning to follow up from our hospital stay and everything went swimmingly. His culture in the hospital grew pseudomonas (BOO!) and staph so that's why we did the 2 weeks of IV's. In our normal eradication strategy, we are following that up with 28 days on Cipro. Fingers crossed we can make it go away again! Next appointment is ENT next week where I suspect they will say its time for another sinus surgery. Poor kid.
No comments:
Post a Comment