Thursday, June 19, 2014

An update on health and life

Drew had a clinic check up yesterday and I'm happy to report a clean bill of health. He has gained both pounds and inches, which has moved his BMI down to 61%, but it is still above 50th which is the CFF's healthy measure guideline. We hadn't done a culture in a while, mostly because his health has been good and also because we know what bacteria he is growing. I always wonder if something new might be there causing silent harm that we're unaware of, but knowing that an exacerbation is typically the culprit in lung damage and having not experienced that anytime too recently, we've forgone the test. It's a simple test, not unlike a strep throat swab, but the anxiety that accompanies it - the waiting and wondering and worrying, knowing that it's better to know while trying to embrace the bliss that is ignorance - that is the tough part. Drew doesn't even mind the test anymore, happily opening wide while I stick the swab down far enough to induce a cough without triggering a gag. I do the test at home for a couple of reasons. First, I'm perfectly equip to do it. Second, if we do it a week before our clinic visit, then we have the results to discuss when we go in for the checkup, versus having it done at the visit and then waiting for the doctor or nurse to call to discuss the results, catching me at the most inopportune times, like at the grocery store or while giving baths (both have happened).
Yesterday my husband took Drew to his appointment as I was out of town at a conference. The culture report wasn't final at the time that he was there, but it wasn't showing achromobacter, our nemesis and the bacteria that's been rotting his airways for the past year and a half. There was mild H.flu and normal oral flora, but no achromobacter. I knew that it would show up on the final report because it always does, but a little bit of me hoped that it wouldn't. The final report came through today and it did show mild achromobacter. Drat. I mean I knew, but I'd hoped. Such is life. Otherwise he is well and we are happy.
Work continues to move right along with the C3N work. We have patients in the CF Clinic in Cincinnati testing out the Orchestra platform  for self tracking and better communication between visits. We are meeting with the Telehealth Department next week to organize what we anticipate will turn into a pilot, allowing patients to participate in *some* clinic visits remotely. It's truly remarkable what we can do these days!
In other news, it looks like I will be speaking at the very conference where I was told just two years ago that the reason patients aren't invited is because they can be a distraction. The request that I received was in response to an abstract that I submitted called "THE VALUE OF PATIENT PARTNERSHIP IN IMPROVING HEALTH AND CARE IN CYSTIC FIBROSIS" and to quote the request, "We really think it is phenomenally important to hear from parents/patient pov." Yes, sir, it is.
The summer days have been both long and good to us. We are heading out east in a few weeks for a whole month! Our tour begins with a week in Stone Harbor, NJ followed by two weeks in the greater Philadelphia area before heading north to southeastern Connecticut to round out the month. Here's hoping we don't repeat our visits to CHOP in 2013 and 2012!
More news as it breaks!