Thursday, February 21, 2013

Three Year Anniversary

We had our 3 Year Anniversary appointment at the CF clinic on Wednesday morning. Drew had his labs drawn a week before the visit so that we could review them with his docs at the visit. He came through with shining colors! Everything looked great - all of his vitamin levels, all of the organ function tests they do, all around an A+. We didn't do any imaging this time because Drew is about to start a 2 year clinical trial using imaging and blood work to identify bronchiectasis as an early age. They will do a CT scan and an MRI (a super brand new kind involving the use of helium that does something to the protons...or something like that) along with bloodwork to determine if there are markers in the blood that correspond to what they see in a scan. It is a 2 year trial and will hopefully be getting kicked off later this year. The results will be available to us and our doc, and we know the doctor running the study (the one and only JP Clancy) so we will just take a look at them to see how he's doing. I hope everything looks as good as it did last year when we had his CT!

This time we were in clinic, we saw an endocrinologist. For anyone unfamiliar with what they do, basically they deal with all things hormones. So for CF, that could involve insulin production or growth horomone, among other things. Drew is between the 25th and 50th percentile for height and his height prediction based on our heights says that he should be near the 70th percentile. I understand that kids with CF can have trouble with growth given all of their vitamin deficiencies and other abnormalities and I certainly don't think that Drew looks too short or scrawny, but we wanted to keep an eye on things to make sure that he doesn't start to drop off that curve. There is nothing concerning going on right now, but we're going to have some labs done and a growth plate imaging study done (I don't think that's the official name) and just keep an eye on things. I am anxious to learn more about how we will work with the endocrinologist going forward and more importantly how she can help us!

I think I mentioned a couple of weeks ago that Drew had an ongoing cough for a couple of weeks and we ended up putting him on an oral antibiotic. His culture showed some staph, which he grows from time to time, but we really just thought that his cough had gone on for long enough to take action. The antibiotic seemed to clear him up pretty good, but once he was off of it it seemed to come back within a few days. It's not a terrible cough - just more than his baseline and a little junky. We also realized that when we are cleaning out his sinuses a couple times a day that we are getting a lot of stuff out. So yesterday I talked to Drew's doctor again and we decided to put him back on the antibiotic for another week, and to be aggressive with our sinus rinsing. We are starting to think that this is a sinus issue and not a lung infection. This seems pretty similar to what happened last year around this time - a congested nose and a lingering cough led us to ENT where they found significant sinus disease and a couple of weeks later we had surgery. We've actually been doing really good with the sinuses since that surgery, but we might have reached that point again where we need to go back in and take surgical action. I hope not, like really really hope not. I'm hoping that with aggressive rinses and an oral antibiotic and a topical antibiotic drop in the nose that we can shrink some of the polyps back down and avoid having them scraped out. I feel like every time we end up in the hospital for a procedure, no matter how big or small, we end up going home with a new bacteria that we don't need. I know the importance of having some of this stuff done, but whatever I can do from home I would definitely rather. I guess we will see how things go!

Last week I had a conversation with and was asked to be a part of their team!! We're going to connect again next week to work out specifics. It will only be a part time gig and will start out working with the IBD clinic at Cincinnati Children's and then expanding from there. The reason we are starting with IBD is because and the C3N are already integrated with them as they were the pilot disease for these projects. The results being seen from IBD folks utilizing the C3N are kind of fascinating and I am so so very excited to get to be a part of it. First step IBD, next step CF...and then we change the world [of chronic conditions]!

Next week I'm working with the QI team at Children's to create a Facebook page where patients and families can connect with clinicians to share tips and advice. Then next Saturday  morning we are heading east to get ready for the CF Foundations annual advocacy campaign "March on the Hill" followed by the Volunteer Leadership Conference. I'm really excited about both, and will be tweeting throughout both events (@ekeeleymoore). Once we are back in Cincinnati I will definitely find some time to post about it!

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