Friday, June 14, 2013

Clear lungs, full hearts, can't lose!

What a week! We found out on Monday that Drew was still culturing achromobacter. Much to our disappointment, it is looking like we're not going to get rid of this bug. The question turned from how do we get rid of this to how do we suppress this enough that it's not causing a problem. There was a period of time where it looked like he was going to need to be on constant antibiotics to keep this at bay, but this for us was not a good option. He's only 3 and things just shouldn't be this bad yet! So we decided with his doctor to do a high-res chest CT scan to see if it was causing any lung disease. Talk about an anxiety filled couple of days waiting for that to happen, then waiting the few hours for the doctor to call after the procedure for the results. We had met with his doctor on Monday to talk about our options - options for if it looked good and options for it it looked bad, or even really bad. I was so nervous, but after all of that waiting and worrying, his CT came back 100% clear! There are no signs of bronchiectasis or mucus plugging. Age 3 and no lung disease yet.

While that was great news, we're still culturing achromobacter that is causing him to cough more than he should be and from time to time causing his oxygen saturations to drop, so we need to treat it. Wehave a theory (we = us + his doc) that because of Drew's airway abnormalities that he might not be getting as much of the inhaled antibiotics as we think he is, as there is a degree of airway reactivity and inflammation cause by inhaled antibiotics and he already has that stuff going on in the absence of an antibiotic. So we're going to take a shot at this bacteria with 90 days on inhaled antibiotics, alternating between two different kinds every 15 days. Its going to be a lot of extra work, as these inhaled antibiotics typically add about 30 min to each treatment (so an extra hour + a day), but it's a small price to pay for healthy lungs. We need to get this thing under control before it sets up shop in his airways and starts to cause real damage. Hopefully it works, but in the meantime I will continue searching for alternative means to eradicate this beast.

1 comment:

  1. I'm not super familiar with achromobachter and I've never personally cultured it, so I don't know which antibiotics it is sensitive to, but just wondering if you've thought about using an oral over inhaled antibiotics given Drew's airway issues.

    For me, inhaled antibiotics only work to control my bacteria when I'm at baseline. As soon as I get an exacerbation, my lungs aren't able to absorb enough antibiotic to effectively fight the infection, so it just becomes an uphill battle. I have to switch to oral antibiotics to have any hope of gaining control over the infection without resorting to IVs.