Wednesday, August 7, 2013


I've been reading this great book called Unaccountable: What Hospitals Won't Tell You and How Transparency Can Revolutionize Health Care. It's really good, and a lot of what's in it is stuff I've been working to change. One of my favorite quotes from the book is this: "In short, data transparency, properly weighted, would empower patients to make informed decisions about where they should spend their health care dollar. If we had more of it, the accountability visited on hospitals would revolutionize the quality of medical care in every city in America, dramatically reshaping our health care landscape." I do believe that to be true. 

We just spent a week in Michigan with my husbands family. It was so nice to get away for a few days. Drew has been doing pretty good lately, knock on wood. We're about to finish up 60 days of inhaled antibiotics. I have little hope that the achromobacter will ever be eradicated, but it's been nice to be cough free and generally healthy. What I suspect will happen is that he will continue to culture the achromobacter and we will cycle 30 days on/off of an inhaled antibiotic. I just hope, so so much, that the 30 days off won't be symptomatic and causing him harm. I guess only time will tell. We finish up this Friday and will do a culture next week. He sees the doctor again two days before he starts school so hopefully we will at least get a clean bill of health to start out the year.

School is definitely been on my mind. I'm trying not to worry to much. I know that he will be great, that he will love it and enjoy being around others and learning and playing and just being away from me for a bit, but I worry that he's going to get sick. No one takes care of him like I do. No one follows him around with hand sanitizer to make sure his hands are clean before he eats and drinks or after he's been outside playing like I do. No but me makes sure that the kid next to us at storytime isn't coughing and sneezing up a storm. We have never missed enzymes at any meal or snack or drink ever. And now I have to give some of that responsibility over to Drew and to his teachers, and I'm definitely stressin'. I know it will all work out, but it's just a change and sometimes change can be hard.

I wish I had more time to write on the blog. Summer has been great, but very very busy. When school starts in just a couple of weeks, I'm hopeful that I can find some more time to jot down more of the things I'm thinking about and working on!

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