Tuesday was a bad day

Last week I was invited to attend a tour of the CF Care and Research facilities at Cincinnati Children's, not as a guest, but as a parent who could offer real life experience to the other folks who were there and interested in investing either their time or money into the CF Foundation. I talked a lot about all that I do at Children's and within the CF community. I personally find very little benefit to sitting around and grumbling about how horrible things are and have the perspective that if you want something to change then go make it happen. One of the guys there asked how people stay positive and if there is support to help folks maintain a hopeful attitude, like the one that I had, when it seems to easy to get knocked down. I answered by saying that while there is great support from both doctors and other clinicians, social workers and psychologists, other parents who are in your shoes, a lot of it, I think, has to do with your own personal attitude and frankly I'm not sure whose supposed to be responsible for that. Sure, this disease sucks and takes a lot of time and energy, but if you don't fight for what you believe it then everything will remain the same and nothing will change. I try to find the positive, look toward the good, make things better.

A couple of months ago, after I attended the North American CF Conference, I wrote about one of the sessions I'd attended on Infection Control. I have, since the beginning of time [2010] felt that if Drew was culturing a new bacteria that he was getting it from the clinic. They always tell you that many of these bacteria are in the natural environment and while totally unharmful to non-CF kids, CF kids are just susceptible to getting them and that you'd make yourself nuts trying to figure out if it came from the bathtub or the swing set or the museum and that kids can't live in a bubble and yadda yadda yadda. I listened...mostly. Everyone who knows us knows that we are cautious but that we don't by any means live in a bubble. So when we go to the doctor perfectly healthy and it comes back that we're growing some funky new bacteria, I can't help but think that he got it there. Back to the conference. I attended this session on infection control and my worst nightmare was becoming a reality. Researchers had started using DNA in bacteria to genotype them and find out exactly where they were coming from and what they found was that patients who were in the clinic on the same days or who shared a hospital room one after another were sharing identical bacteria. Pardon my mouth, but MOTHER FUCKER!!! I KNEW IT!! Even with superb infection control at our clinic and in our hospital - great cleaning between patient visit, all clinicians gowning up before they come in, us wearing a mask and not touching anything from the time we leave the car until the time we get back into it - even with all of that in place, indirect transfer was happening. We all use the same elevator to get up to clinic. Joe Schmoe takes the elevator up to C5 at 9am and has some funk growing. He is coughing his whole way upstairs. We get in the same elevator an hour later for our appointment and end up with the same bacteria. Or a kid is reading a book while he's in for one of his 4 hour check up's and he sneezes. Later he closes the book and puts it away. The outside of the book gets wiped down, but not the pages. The next day my kid reads that same book and boom, we're contaminated. Do I know that's how its happening? No, not for sure. But I'm about to find out.

Later that afternoon, I tuned in to the Cystic Fibrosis Foundation's new Infection Control webcast. They pretty much presented exactly what I'd heard at NACFC (above). The new guidelines were focused on Foundation events and they said that the clinical recommendations would be out this summer, but basically they were saying that they have data that proves that patients are passing these harmful bacteria indirectly to one another by, for example, sharing an elevator even if not at the same time, touching handles or doorknobs, things like that. So their new guidelines say that only 1 CFer can be at any indoor foundation event and that at outdoor events CFers need to identify themselves and stay 6-10 feet away from other CFers. Guess whose taking this new evidence completely serious and will not be letting Drew anywhere near anything CF related anytime soon!

Later in the afternoon that day, I got a call from Drew's doctor about a strange bacteria he had grown in the culture we had done earlier in the week. He was growing something called Achromobacter, a very rare and not-normally-found-in-the-environment bacteria that is resistant to EVERYTHING. EVERYTHING!!! How did this happen? How did he get this?? Well, another kid that Drew's doctor sees also has/had achromobacter. Did he get it from him? Hard to say. But they're going to genotype it to find out. Achromobacter isn't the most horrible bacteria someone with CF can get, but its not great either because of its resistance to antibiotics. It also causes inflammation, and a kid with CF doesn't need any more inflammation in their aiways then they already have. Its sort of unknown what kind of long term damage achromobacter causes because its pretty rare, but it seems best to get rid of it if you can. One kind of rule of thumb with less common bacteria is to treat if its causing a problem. Drew's had this weird lingering cough for a couple of months that seemed to go away a little with antibiotics but kept coming back. So we decided that the best move would be a bronchoscopy to see what his airways looked like. If they looked clear like they have in the past, then we would do a culture and see what grew and make a plan from there. If they were junky, we would do IV's.

On Friday morning, we went in for our bronch. After being delayed an hour and a half, he finally had it done and he had a lot of gunk. We just got the culture results back today and he had achromobacter growing way down in his lower airways, so we decided that we needed to do some IV's. I learned something about antibiotic resistance today, that just because a bacteria is resistant to an antiobiotic in a petri dish doesn't always necessarily mean that it will be resistant in your body. Who knew! Anyway, tomorrow we're going in for a PICC and we're coming home. I didn't want to be in-patient and i'm fully capable of doing this all at home. We are doing to use two antibiotics, tobramycin and something else I can't remember and see where that gets us. After that treatment, we'll re-culture and make decisions from there. Hopefully, hopefully, it will go away. One step at a time.

When I talked to Drew's doc on the phone today, I expressed my fear of the clinic. The place that we need the most is looking like it might be the most dangerous place for us to be, and I'm terrified to take Drew back in there. She understands my fears and we're going to try to figure out a way to make this all still work. I totally get the importance of needing to see his doctors on a regular basis, but with something like Ginger.io and the C3N for CF (which I have a LOT to talk about that!) and us tracking our health on a regular basis, I don't know that we do need to go in that often. I am usually full of both good and bad ideas, and for this situation I've found myself in I cannot think of anything. I'm hoping that something will come along to either prove I'm right and provide a solution, or prove me wrong. I guess we shall see!

Looking back on the past couple of days and the question that the guy on the tour asked me, today I just wanted to cry. I wanted to scream and yell and punch CF in the face. Damnit to hell I hate this. Hate hate hate it. And I'm tired and I'm scared and I don't want Drew to have to go back to the hospital tomorrow for another procedure and then have to get this horrible medicine that will kill the bacteria but will also kill his appetite and make him not feel great and will prevent him from doing things like going to his first t-ball practice. I don't want to do this, no part of it! It's disheartening to think you're doing everything right and you still end up with a shitty situation. And while the next two weeks will be totally exhausting doing IV antibiotics every 8 hours around the clock on top of everything else that we have scheduled and planned and all the other crap that pops up n between, he will be better off in two weeks (God willing) than he is today and his health is the most important thing. So I take my moment to rant and curse the world, but tomorrow we will wake up and continue to do whatever we need to do to cure this bitch. Wanna donate? Click HERE!