Tuesday, May 28, 2013

Personal Experiments

We're wrapping up 30 days on inhaled Colisitin and I think its fair to say that everyone in this house is anxious to regain that hour of our day. I don't know if it's working or not. Drew has seemed to be doing alright the past couple of weeks, but just over the past couple of days seems to have something going on again - kind of tired, coughing more than normal, less interest in food. I've been emailing his doc and we're just keeping an eye on things for a couple of days. I hope its just a virus and he gets over it.

We've been talking about the plan for if the Achromobacter isn't eradicated and it seems like there's a decent chance that that will be the case. Right now, our plan is to cycle Colistin like many people cycle Tobi for pseudomonas. We will do 30 days on and 30 days off indefinitely if he grows Achromobacter during his next culture to keep the bacteria from causing problems. It's so hard to eradicate some of these pesky bacteria. We just have to do what we have to do to keep the bacteria from acting up and causing breathing difficulty and lung damage. I really hope it's gone but I'm okay if its not. We'll deal with what we have to deal with.

We had two great fundraisers the past couple of weekends. The first was a Doin' It For Drew BBQ and the second was our 3rd Annual Garage Sale for a Cure. We raised about $700 at our BBQ and almost $1100 at our yard sale. Let me just tell you that the haggling that goes on with the supremely cheapest of cheap people at a yard sale means that that $1100 was hard earned.

I'm still working hard at CCHMC on bringing a C3N to the CF Community and it's all about to happen. I've started working with a PhD student from MIT who created something called Personal Experiments where I can use mobile technology to track a whole slue of things - weight, appetite, stool, medications, you get the idea. You can use that data to create personal experiments. So for example, one thing I've always thought is that Drew's appetite decreases in the days leading up to him getting sick. I know that there's some correlation, but now that i'm actually tracking his cough frequency and his oxygen saturation and his appetite, I have actual data to show me if there is a relationship there. I've only been at this for a couple of weeks so I don't have enough data yet to make any real observations, but it's a start. Hopefully the CFF and Cincinnati Children's will be reaching an agreement here any day now to get some feet on the ground running with this project. I'm already running so they're all going to have to catch up!

We will re-culture Drew in about 2 weeks so cross your fingers and say your prayers that we get results that we like!

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