Monday, November 14, 2016

Week 169: Aftermath

So, some politics occurred since I last wrote. We all have opinions about this, and I have gone through a gamut of emotions about it. But this is not a blog about politics, and I'm not going to get into all that here. I'm just acknowledging that it happened, and stating the obvious: we, like everyone else in the country, are going to be watching closely to see what happens next. Now back to your regularly scheduled programming. I'm sorry to report that this is going to feel like a re-run.

On Wednesday (a week to the day after the PICC was pulled), Lemon had a runny nose. Doesn't sound like an emergency, but we have been down this road altogether too many times. Thursday he started coughing, and Friday we were on the phone to the clinic. Both the CF specialists were out of the office, and unsurprisingly the pulmonologist on call decided to stick to the letter of his treatment plan and give us yet another two-week course of levofloxacin. Because that has worked so well in the past (ie, it has never cured Lemon of anything in his entire life). He's been on it for a few days now and he is certainly better than he was when he started it, but as was the case last time it seems to be getting him to about 80% better and that's it.

In summary, we need a new plan. I don't know what the new plan should be, nor should I know because I'm not a pediatric pulmonologist and I don't have a full knowledge of what all the options are, with their attendant benefits and risks. What does worry me is the fact that I don't know where this new plan will come from. Sadly, I've grown increasingly convinced over the last few months that it is not going to come from our hospital.

When Lemon first got sick in September, I suggested to our team that we needed a fundamentally new plan. That seemed to fall on deaf ears, because instead we went on our all-too-familiar journey of a few failed courses of oral antibiotics followed by a round of IV Zosyn. Now, we're heading down the exact same path again, whether it's a repeat battle with something that wasn't killed by the Zosyn or whether it's something new (opinions differ). We have been down this path entirely too many times to continue going down it and expecting a different result at the end.

So, in the coming weeks we will be looking to get Lemon seen at another CF center. The logistics seem a bit daunting but I really feel like at this point we have no choice. Lemon's doctor, whom we really trusted, left our clinic in March. They haven't been able to recruit a replacement for him yet, so right now there are just two CF specialists at our center, and they work really closely together. That's good in a way, but it doesn't really leave room for a lot of diversity of opinion or new ways of thinking, which is what we really need at this point. 

With all this going on in the background, it was great to have some fun diversions. One of my long time cycling and running buddies from Boston came out to visit, and we ran the Madison marathon together. It was my first marathon since before I was pregnant with Lime. I'd been hoping to run a personal best, but between the disruptions to my training with Lemon's recent course of IVs and the incredible headwind we had to tackle at the end of the course, it wasn't quite in the cards. Still, I missed my personal best by less than 90 seconds, and placed in the top third of my division.  Not too shabby, and enough of the pain has worn off now that I can say that it was a great time and I'm looking forward more races in the future.

I know some of you wonder where I find the time to train. Honestly, I do it because I have to. I'm no good to myself or anyone else if I don't do this kind of stuff, and after nearly four decades on the planet I know myself well enough to understand that. Some (most) weeks, it's the only "fun" activity that I have time for, but keeping up with a training program and clicking through the miles on my calendar as the count-down to the race approaches keeps me focused on something besides the day-to-day drama in our household. Being an endurance athlete is good training for being a CF caregiver too, since in both cases it takes a lot of patience and perseverance to get anywhere at all. Here's hoping both Lemon and I settle into some kind of good winter maintenance pattern soon!


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