Monday, November 28, 2016

Week 171: No Turkey

Last week, we pushed our clinic to consider some additional therapies in the hopes of finally getting Lemon back to respiratory baseline after over two months of ups, downs, and various forms of antibiotics. We still haven't heard whether our insurance will cover the inhaled antibiotic Cayston for off-label use, but they did cover Flovent (a corticosteroid inhaler) without batting and eye. And, I'm glad they did--after 48 hours on it, Lemon was cough-free for the first time in ages. Of course, he's still on levofloxacin so the big challenge will be in 10 days or so when that ends, and we see if he can finally sustain his respiratory health on his own. Fingers crossed. At the moment, the plan is to stay on Flovent until spring, and we're still looking to get a second opinion with hopefully some additional new ideas (no progress on that yet, still waiting on insurance coverage). But, for the first time in a couple of months, I feel like we may be on the right track, or at least we've found the first step onto the right track. And I am very thankful for that.

Other than that, it was a fairly quiet week, in as much as having a one year old, a three year old, and a four-day holiday weekend can be quiet. We enjoyed a fast vegetarian Thanksgiving lunch with Nona and Opa, and then found various ways to keep the kids amused and out of trouble over the next three days. We went to the indoor farmer's market, the grocery store, the children's museum, and a donut shop. And we talked to friends and family scattered across this big country that we live in. I am very thankful for all of them, and their support. It is reassuring to see that even though we don't see each other in person quite as often any more, they are still out there waiting for us at the other end of the internet.

Lime is starting to learn lots of words. As befits his Wisconsin roots, the first vehicle name that he learned was "tractor," followed in rapid succession by "bus" and "dump truck." He knows what the horse, the cow, and the sheep say. And, in true Badger style, the two foods that he can clearly ask for by name are "milk" and "cheese." All other foods he still asks for by pointing at and grunting with such vigor that his whole head turns red. And when I say all other foods, I mean exactly that. I kid you not when I say that this child was in tears the other night because I decided to limit the number of roasted Brussels sprouts that I was willing to give him as a snack before dinner. I'm thankful to have this lovely little person who appreciates food in my life!

Monday, November 21, 2016

Week 170: Off label

This week, I went to Chicago for a night to attend a conference for work. This was my first night with zero children since October of 2014. So, how did it feel to be solo in a city with no one but other grown-ups to talk to? AMAZING. I will even forgive my colleagues for stretching our work dinner until after 11pm so that my blissful night of uninterrupted sleep was only 7 hours long. I'm hoping this marks the beginning of a happy tradition whereby I get out of dodge at least once or twice a year. But, now I'm back in the thick of dodge, and we're dodging, or trying to anyhow.

Here's where things stand. Lemon's been on oral levofloxacin since a week ago Friday to fight off the resurgence of the thing that we've been fighting for two months now. Ready for something startling? Oral levofloxacin didn't work the first time we tried it against whatever this is, and it isn't really doing the trick this time, either. It's pretty much done what it did before, which is to say that it has gotten Lemon to the point where he feels fine but is still coughing a bit. Not a cough that would make anyone who doesn't know the back story think anything at all was wrong with him. But, we all know the back story here. We know enough to grasp that if he isn't absolutely, 100% at respiratory baseline and we stop the antibiotics, whatever this is will just come roaring back within a few days. So, what now?

As you might imagine, I put this question pretty directly to our care team at the CF clinic, pointing out that doing the same thing over and over again and expecting a different result is, well, you know. I asked what ideas they had to break the cycle. They came back with a couple of things. First, they want to switch Lemon's acid reducing medication from Protonix back to Zantac, because a study was presented at the most recent CF conference that kids who take proton pump inhibitors (like Protonix) have more respiratory infections. I said I was happy to try that, but that they should not forget that Lemon was on Zantac for the first 2.5 years of his life and got just as many respiratory infections as he does now, so I hardly think that will do anything.

The other idea that they had is that maybe Lemon has reflux that is causing or contributing to his problems. They know that he has already had two GI imaging studies, neither of which has shown evidence of reflux. Of course, no evidence of reflux isn't proof that there isn't any, just that it wasn't seen. But, he's also never had any symptoms that would suggest that he does have reflux. In light of all that, I'm hardly eager to do the test they have in mind, which would involve placing a sensor in Lemon's esophagus for 24 hours to measure the pH in there. Oh yeah, they put the sensor in through your nose and then tape the tube to your face and connect it to a data recorder that's in a little pack that you have to carry around while the test is going. What could be better? So, no, not unless there's a really compelling reason.

And, that was pretty much the end of the idea list. I hadn't wanted to plant the ideas that I'd had, because I wanted to hear what the clinic folks would come up with. But, being unimpressed, I wrote back to them and asked about trying another course of Flovent, as we had done back in March in response to Lemon's lungs looking inflamed during the bronchoscopy. Or, how about trying inhaled antibiotics rather than oral since oral really doesn't seem to do the trick for us?  I just heard back today that we can move forward on the process of trying these options. Both the Flovent and the inhaled antibiotic that our clinic suggested (Cayston) will be off-label for Lemon. He doesn't have asthma (Flovent) and doesn't culture Pseudomonas and is less than 6 years old (Cayston). So, those are getting routed to our insurance to see what they will agree to.

In the mean time, we are going ahead with trying to get a second opinion in Milwaukee, but more obstacles there--that hospital is out of network for us. So, I have to file a pre-approval form (filled out not by the CF clinic, but by Lemon's PCP who has literally seen him once) and then the insurance company gets 15 business days to think about it and give us a decision. So, with the holidays coming up, I would be shocked if we get that second opinion before the door closes on 2016.

With all this going on in the background, I am glad that, following the great travel debacle of 2014, we resolved not to try to travel for Thanksgiving any more. I am still sad that we will not be in Boston surrounded by family for the holiday, but the disappointment of never having planned to go pales in comparison to the disappointment of planning to go and canceling. And, I'm hoping that soon we'll have something new to be thankful for--namely, a treatment plan for Lemon that actually works.

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!


Monday, November 7, 2016

Week 168: On the eve

I'm a writer by profession and by hobby. I'm not often out of words. But, tonight, I just don't feel like I have that many left. Nor can I imagine that my loyal readership has much capacity left for consuming words found on the internet after the last few months. Tomorrow is finally election day, so with any luck the flood of online words will slow a little bit, and we can all take a moment to catch our collective breaths and square our shoulders to face whatever comes next.

On Wednesday, Lemon and I went to the clinic and got the PICC pulled. I had the idea that since we had the PICC in and could do blood draws totally painlessly, it would be a good idea to do the draw for his annual labs, since he was about due anyhow. That may or may not have been such a smart idea, since the tests came back today and revealed extremely high levels of a few liver enzymes. This is probably due to the fact that he was just really sick and on IV antibiotics.  Probably. But, now we have something new to sort of keep in the back of our minds for a month or two, until we repeat the tests. And of course, that means a needle stick, which is what I was trying to spare Lemon by having the labs drawn from the PICC in the first place. Sigh. At least the PICC is gone so we can go back to regular "two boy" baths, and the skin on Lemon's arm that was under the dressing can start to recover.

The last two nights have led me to believe that this whole clocks falling back business is specifically designed to torture the parents of young kids. Getting up at 4:15 is bad enough. But 3:15 is really for the birds. And by birds I mean nocturnal owl type things. Hopefully our guys (Lime in particular) will get this sorted sooner rather than later. Either that or I think Papa Bear is actually going to follow through on his threat to set up a Pack-n-Play in the basement.

I know this election has impacted all of us, and I know a lot of you who have more capacity than I do have been personally involved in getting out the vote. I know this not just because you have posted about it on social media, or told me about it in person. I know this because I live in a swing state and I have a land line and IT HAS BEEN RINGING OFF THE HOOK EVERY NIGHT FROM 5-9PM FOR THE LAST MONTH. I do thank you sincerely and earnestly for your efforts, and I am officially done with politics for the foreseeable future. I may take a tip from my grandmother and cancel my subscription to the New York Times for a while. All I can say with certainty about tomorrow is that I'm going to get up, take care of my kids, and go vote. Afterwards, I'm going to get my hair cut.  Because I haven't quite had the time to do that in the last 9 or so months, and whatever the future holds, I will be better equipped to handle it if I am less shaggy than I am now.

See you on the other side!