Monday, January 13, 2014

Deep breath. Exhale. Carry on.

We are 13 days into our current treatment plan which is IV, oral and inhaled antibiotics around the clock. Sadly, there has been not improvement in symptoms. He's not "sick" like most people would think of sick. He's coughing a little more than he normally does, but probably not anything anyone but me would notice. In the past, two days on an inhaled or IV antibiotic seem to make a difference. I thought he might need some extra time since a bronchoscopy seems to cause some irritation and stirs up all the mucus and bacteria just a little. I talked to his doctors last week and we all decided to ride it out. Today we decided to change course. He should be getting better and he's not.
I feel like CF is a crap shoot. We do these epiglottic cultures, like a strep test, where he coughs onto a swab and we catch a little mucus and we put that into a dish for a week to see what kind of bacteria grows. Older kids can cough up a sample but we aren't there quite yet. If he has symptoms - increased cough, decreased appetite, dropping oxygen saturation, lethargy - we treat him with an antibiotic that his current bacteria is susceptible to. However, just because a bacteria responds or doesn't respond to an antibiotic in a petri dish doesn't always mean it will react the same way inside of the human body. The bacteria that we are fighting is called achromobacter and it is almost completely antibiotic resistant. It's sort of like having MRSA in your lungs, only worse (and not the same clinically, for any doctors reading this, I know the differences, the comparison is for the non-medical folks, two antibiotic resistant bacteria, that's all). His culture reports tell us that it is susceptible to a drug called Colistin. We can't (or haven't yet) use that on Drew because it will wreak havoc on his other organs and he's not really big enough to tell us neurologically if he's experiencing symptoms. We've tried to use the inhaled version, which you can think of as topical rather than systemic because it goes right to his lungs to kill the bacteria when he inhales is, vs an IV sending the drugs into his bloodstream to disseminate. Inhaled doesn't improve his symptoms. There has only been one inhaled drug that improves his symptoms and it's an antibiotic called Ceftazadime (it's the one that smells like cat pee - I know, gross). He currently cycles 14 days on/off with inhaled Ceftaz and we see 100% improvement where he is back to his baseline, healthy and well. The problem is that when he's on an off cycle, on no medication, he's getting sick. So we're going to see if giving him Ceftazadime intravenously helps to suppress the bacteria further than the inhaled antibiotics seem to. Fingers are crossed. They always throw in an extra IV antibiotic for good measure so that the bacteria don't go getting all clever and become resistant. We will start those on Wednesday.
Of course we can't just order two new medications and continue on the path we've been traveling, that would be far too easy. The cap on his PICC line is stuck on there and it was supposed to be changed last week. They usually change the cap every 4 days, and whey they'd discovered that it was stuck he had just been changed 3 days prior and only had a week left to go before we all thought that the PICC was being pulled. Well now that we're going to keep that PICC line in for two more weeks the cap will need to come off and if they can't get it off we will need to change the PICC. Joy! They also always administer the first dose of any IV antibiotic in the hospital where he could get immediate medical care if there were any sort of reaction. I appreciate this. My schedule does not. The hospital is formulating a plan as I type this so we will see what happens.
I have a good feeling that this will eliminate his symptoms while he is taking the medicine. I'm anxious to see if his symptoms will stay gone after the medication is finished. I am also anxious to see if I can really survive for 4 weeks of staying up until 1am to administer medication.
I have another post brewing about how much better this could all be going if only things were better organized and documented. If I could reference something that told me how other people managed their symptoms when they had achromobacter, or how their kids reacted to certain antibiotics or antibiotic combinations. Right now, today, I can get the most valuable information to answer those questions on Facebook. That's right, Facebook (don't knock it till you've tried it!). There's a better way folks and I'm working on it. I just need it here now. Deep breath. Exhale. Carry on.

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