Tuesday, October 28, 2014

At least we have a plan!

I think that our baseline is changing. Every time Drew gets sick, with some combination of antibiotics and therapies we seem to be able to get him back to his baseline, which is cough free. In CF, this is important, because one of the most recognized causes of lung damage is exacerbation, and symptoms typically mean that something is going on. We've been off of IV antibiotics for as long as we have ever been - last time was January! - but I think that it's time to start them again. I had a long talk with his doctor yesterday about new symptoms that I have noticed. He is not sick right now, but I have noticed an infrequent cough  happening, just a few times a day, but it's been around for the past 2-3 weeks. I have wondered if it is seasonal allergies, or perhaps a touch of asthma that could be treated with an inhaled steroid, but with some small changes the cough seems to remain.

So what do we do? Some people would suggest that his baseline has changed and he now has a little cough as his baseline. I'm not "some people" and I'm not ready to settle for that until we have exhausted our options in an attempt to return him to his cough-free state. We could try oral antibiotics, or even inhaled, but the bacteria that Drew has in his lungs (achromobacter), is highly resistant to just about all antibiotics. IVs are stronger than oral, and if we want to give it our best shot, we feel that this might be the way to go.

You might ask why we treat when he's not sick. Here's the best way to explain it. Imagine a barrel that we will pretend is your lungs, full of water that we will pretend is bacteria. The barrel can only hold so much before it begins to overflow. Usually, overflow is point where we would treat because we see symptoms. Antibiotics would reduce the amount of bacteria in the barrel and take it down to a level that is no longer overflowing (let's say half full since CF lungs usually have some kind of funk in them causing silent damage). So now imagine that we are in that silent damage phase, perhaps more than half full but not overflowing. And now if we treat with antibiotics, we might be able to lower the level even below the half full point and help to keep those symtoms or overflow from coming back for a longer period of time. Of course there is the possibility that this won't work and he will just have a cough from now on, but there's a reasonable chance that it will and that's what we're going with. I talked to his doctor about this for a long time yesterday, and we decided that being aggressive is in his best interest. It's certainly not what every doctor or patient would choose, but we're going to give it a try.

We hope to go in for our PICC on Friday, November 7. I am going to be out of town most of next week, and running IVs from home is both mentally and physically exhausting. It's definitely not something that one parent who is in charge of 3 other little kids in addition to the one on IVs should have to do alone, so we will wait until I get back. I don't know yet what antibiotics we will be on, but have another post coming on quality improvement type stuff where I will talk a little bit about that. I hope that they're every 12 hours because those every 8hr treatments are so draining. In an effort to avoid even more antibiotic resistance, I think we are going to try inhaled Tobi or Cayston for the week leading up and the two weeks following so that he doesn't get 6 weeks straight of Ceftazadime, the one antibiotic that this miserable bacteria still seems to respond to.

This sucks, but I feel like going into this with him well, and having a week to mentally prepare for a PICC and our crazy hectic life when Drew is on IVs is a nice way to do it. When he is sick and we get thrown into a tailspin, it is much harder to find our footing and regain composure. I don't know if this all will work or not, but I'm hopeful that it will, and at least we have a plan!

1 comment:

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