Week 232: Advocate

For the past, oh, I don't know, let's say a year, I've wanted to do something to add my voice to the public discussion on healthcare. Sure, I write the blog, and I've called my senators more than a few times, but it was always on my mind to try to do something more. Luckily, an opportunity was just dropped into my lap. Our local CF Foundation chapter invited me to go to the Wisconsin state capitol in a couple of weeks to meet with members of the state legislature to talk about issues important to families with CF. Even though I'd been hoping for just such an opportunity for a while, my first instinct was to decline--spending a whole day in an out of offices of people I don't know, talking to them? Ick. But, I managed to overcome my initial reluctance and signed on. So, that's forthcoming.

Other than that, pretty much business as usual here on the home front. Lemon continued to have a lingering but not terribly bad cough throughout the week. I fully intended to do an extra treatment with him during the week on several days, but sometimes it can be nearly impossible to fit in. On Mondays, he has food school, so we get home from regular school at 12, and have to leave again at 12:45 for food school, which gives a grand total of 45 minutes to get into the house, do a treatment that takes just over half an hour, re-locate all the outerwear, and leave the house again. It can be done but it isn't any fun for anyone. Then on a couple of other days, when our afternoon schedule was less hectic, he ended up being so tired that he took naps, and there is just no way I am going to wake up a child who is sleeping and desperately needs the rest to do an extra session in the vest. So, then it was Friday. Our schedule over the weekend was much more relaxed, so we were able to do 3 treatments both days, and I do really feel like that helped him to clear out the last bits of the cough, and he's basically back to baseline now. Would he have gotten there sooner if I'd managed to fit in more treatments during the week? Maybe. Do I feel guilty for not squeezing them in? Yes. But I try to be realistic.

Meanwhile, poor Lime has a couple of pretty sizable cold sores around his mouth. They don't trouble him too much except when it comes to eating ketchup. Which for him is a big problem, because he dips everything in ketchup. Not just the usual suspects like hot dogs and french fries, but also sandwiches, carrot sticks, apple slices, pieces of cheese, you name it. So, hopefully those will clear up soon.

As you may have heard, we're in the middle of a pretty bad flu season, which makes me nervous. Please be good to yourself and those around you. Get your flu shot if you haven't yet, wash your hands a lot, don't lick random surfaces while out in public spaces (yes, I live with preschoolers), and stay home if you're sick. While the flu may be an inconvenience to most of us, to vulnerable people like Lemon it could be an absolutely devastating illness, so please keep people like him in mind when you're deciding whether or not to go to work or send your kid to school. There are still another 12 or so weeks of flu season left, so please be vigilant!

Week 231: Kookaburra

This week, I would like to begin by describing a dream that I had one night this week. I don't usually remember my dreams, but this one was especially vivid. Here it is: I dreamed that Papa Bear and I were living all by ourselves in a small, modern apartment in Cambridge. Just the of us, no kids. The plot of the dream was as follows: I woke up (in my dream) after a full night's sleep, sat down at my table with a cup of hot coffee and read something. Also, it was silent. Completely silent. The end.

I have never really been good at interpreting dreams and I don't intend to start now.

What else is going on? Well, as predicted, our streak of good luck with colds has drawn to a close. A month of relatively good health in the middle of winter isn't bad, though, all things considered. This one is a weird one, though--when Lemon first got it, it came on fast and hard, from zero to a really severe cough that was making him cry in his sleep within 12 hours. And let me assure you as a CF parent, there is nothing more heartbreaking than hearing your poor kid cry in his sleep because coughing hurts. Papa Bear and I were sufficiently alarmed that we started talking about Cayston right away, but agreed that since he had no fever and that it had only been 12 hours, we were too seasoned in this fight to just jump straight to the intervention plan. I'm glad we didn't, because by 24 hours in, the cough had backed way off, no more crying, tolerating the full volume of his tube feed at night with no trouble. But it's lingering in a way that I don't necessarily like. He's still got a pretty frequent, loose-sounding cough. On the other hand, he is clearly feeling fine and the tube feeds are still staying down so we are just sticking with doing 3 vest treatments a day and watching.

Of course because he is not feeling 100% this week, eating has been much more of a struggle than last week. He did do one new thing, though, which is that we went to a friend's house for a play date and he actually ate snack there, which he'd never really done before. He usually gets thrown off by things not being exactly the same as what we have at home. But this time, even though the snacks were different, he sat down and actually ate stuff with his buddy. And, honestly, about the same volume of food as his buddy. I am cautiously optimistic that we've reached the two steps forward, one step back phase of this process, where we continue to make incremental but measurable progress. Now, to get that to translate into some more body weight. Sigh.

Lime has continued to wake up to pre-game with me at around 4 or 4:30 every morning, which is just awesome. He really likes fig bars, so my strategy is that when he wakes up, I grab a package of them, open it (it must be opened all the way, with the wrapper laid flat, otherwise he believes that he cannot get to the second piece), lay the opened package next to him on his bed, and tell him to eat it and go back to sleep. Which works in the sense that I get to be back in my bed from say 4:36-5:01. It's perfect. A few years ago there were lots of stories in the news about people who took Ambien or other sleeping pills and then would wake up and find their bed mysteriously littered with candy bar wrappers, which is pretty much the scene in Lime's bedroom right now. Oh well.

For those of you who are not interested in cat hilarity, you may want to stop reading here. Although, with the news cycle we've gone through in the past week, who couldn't use a little cat hilarity?

First, both Duncan and Donut figured out how to do this:

Next, we got this:

Here's where we are now:

Anyone have a metal canister with a screw top (preferably locking) lid to send me?

Week 230: Vigor

Lime (remember him?) hit the 2.5 year mark this week, and in honor of that occasion had a check-up. Lemon has never minded going to see the regular pediatrician, presumably because it is not nearly as bad or as time-consuming as a visit to the CF clinic. Lacking this frame of reference, and being 2.5, Lime acted as though he were being kidnapped. A small bribe in the form of M&M's went a long way towards soothing his troubled soul, though. At the check-up we learned that he is still, in the immortal words of his first pediatrician, "tiny but vigorous." However, he is incrementally less tiny than he use to be. Whereas at his second birthday he was in the 4th percentile, he has now jumped all the way up to the (wait for it) 11th. So, still fairly minuscule but now within the magic range of 5th-95th percentile that pediatricians find reassuring.







The only minor problem is that to get him there, I've been letting him drink whole milk all night long, to the tune of a pint a night. Well, it turns out that's not so advisable from a dental perspective. I switched him over to water, which he's taken to admirably well, except of course for the part where now he's waking up at 4 a.m. again to have pre-breakfast. One imagines there must be a point at which he will be able to consume enough calories during the day to sustain himself through the night, yes?

And then there is Lemon. I hardly want to write about it for fear of tempting the fates, but the purpose of the blog is to report the news, so here it is. Lemon is eating stuff. All kinds of stuff. Sometimes, even "a lot" of stuff. Double-digit numbers of bites of the same food. Randomly trying new things. Pasta with red sauce and Parmesan cheese ("This is really delicious, Ma."). Hamburger with ketchup. Fried cheese curds. Watermelon. Weird hummus that was not exactly the same as the hummus that we have at home. Chips with seeds in them. Crackers with cheese spread on them. It's honestly shocking.

So, what's going on? Probably several things. He's continuing to get older, and to become more aware of what his peers are up to. We've been working hard at food school, and he's acquired new skills and confidence when it comes to eating. He's been healthy for something like 3 consecutive weeks, which is the longest illness-free period we've had since school started, so maybe he's finally feeling truly 100%. I have one other idea, I have no idea how valid it is, but thanks to ursodiol, his liver is functioning normally for the first time in his life. A very common symptom of liver inflammation is: poor appetite. I do wonder if for a long time he has just not been feeling like eating because of that inflammation, and now that it's resolved, it's contributing to this new interest in actually eating things. As with so many other things about treating CF, we will never know for sure. In this particular case, though, I'm willing to live with some uncertainty. 

Week 229: Two of a kind

This week marked another milestone of sorts: four years since we moved to Madison from our long-time hometown of Boston. It's been both forever and no time at all. I had a chance over the holidays to catch up with a few of the wonderful friends that we made while we lived there. Although, ironically, none of the people that I talked to actually live in Boston anymore, there's been quite a diaspora over the last decade or so. Still, I miss all of them dearly and wish there was some way to teleport around the country to see all of them more often!







One thing I definitely noticed this week was an overall uptick in Lemon's eating. I don't know if he decided to turn over a new leaf for 2018 or what, but all of a sudden he's trying more thing and eating more of the things he tries. Still not anything that would register as the volume of, say, a normal meal, but definitely different than what he's done before. We took the kids to a restaurant (ok, it was Culvers) and he actually ate about half of a chicken tender and 2/3 of a dish of vanilla frozen custard. And sat still at the table f or more than 10 minutes in doing so. This is what progress looks like around here! He's also said that he wants to learn how to take pills and to stop doing formula. One goal at a time.

After bath one night this week, Lemon explained to Lime he wears a tube at night because he has cystic fibrosis, so he is becoming at least vaguely aware of the idea that not everyone is like him. His tone when explaining it was more along the lines of "I have an amazing superpower that you don't have that lets me wear this tube and you can't have one," so I don't think he quite knows what it all means yet, but I suppose it's better to start this journey from a positive place.











One interesting tidbit that I'll just put out here for any fellow CF parents who are reading along is that we got back another batch of lab results for Lemon, this one on his vitamin levels (people with CF have a hard time absorbing fat-soluble vitamins). Interestingly, his A and E levels were in the high end of the normal range, but his D level was at the low end of normal, even though there is vitamin D in the special CF vitamins that he takes (the same one that gives him all his A and E), and we also give him extra vitamin D on top of that. We've been giving the extra D by using concentrated vitamin D drops that we add to his formula. One of the nutritionists told us that for reasons that no one seems to understand, vitamin D and tubes seem to be a bad combination. They think, although there's no proof, that vitamin D sticks to the insides of the plastic tubing rather than going into the person's belly, so giving it through the tube is ineffective. So, now we're supposed to switch over to doing that orally. It sounds like no big deal but it means readjusting one piece of our already complicated daily routine. We'll get there.

Speaking of adjustments to our routine, here's a good way to drive a patient or caregiver insane if you are a pharmacist. Say the patient has a one-week supply of a medication left, and asks for a refill of the medication. Give them one month's worth, divided into one small bottle with a week's worth of medication, and a large one with the remaining 3 weeks. Then tell them that the small bottle actually contains medicine that will expire in a week, so they should use the small bottle first, then finish up the one-week supply that they already had at their house, and then proceed with the next 3 weeks of the refill. Why not? It's not like patients and caregivers have anything else to think about...

Week 228: Into the new

Welcome to 2018! We closed out 2017 with the last few days of Grandma and Grandpa's visit, followed by a few days at a water park in the Wisconsin Dells (aka America's water park capitol), and our annual New Year's eve party. We celebrate with the Azores to ensure bed-time compatibility.














Although last week I focused on all the positive aspects of our clinic visit, there is, of course, always one cloud in the sky: nutrition, in this case. As I'd expected based on my own observations at home, Lemon had not gained any weight since June, but had grown 1.5cm since September. So, his BMI fell from the 70th percentile to the 40th. As his nurse practitioner pointed out, 40th isn't actually all that bad (long-time readers will remember the bad old days when we were in the 5th percentile for BMI). And it's not quite accurate to say that he hasn't gained any weight since June. He has. And then has lost it again. And gained and lost and gained and lost without any ability to get ahead with all the various colds he's had since school started.

So, it is time for a new and improved nutrition plan. The plan I wanted was a plan to get more calories into a smaller volume of formula, so that when we have to cut back the volume of tube feeds due to illness we don't fall quite as far behind on the calorie count. Of course, this is not a standard plan, but it turns out if you push a bit, there is a way. We left our clinic visit with a sample canister of a product with the appealing name of Scandical, which is essentially concentrated, powdered, tasteless, odorless, soluble calories. Given that Lemon was underweight from being sick off and on for so long, I tested whether adding a few tablespoons of the powder (the equivalent of about 120 calories) to his regular overnight feed could help him get the weight back on. Short answer: yes. Within a week, he'd put on over a pound. It's amazing what a hundred or so extra calories a day will do.

The only minor hitch is that, upon requesting more Scandical, I learned that the product has been discontinued, but never fear, a similar product called Duocal is also a thing. Now I just have to figure out where to get it from and how it gets paid for, but everyone needs a good January project. I do feel mildly crazy that my son's "diet" is essentially a chemistry experiment, when I'm seeing everyone posting about how they're eating only whole foods or giving up added sugar or whatever other totally laudable New Year's resolution they've come up with. Some day. He did eat 6 Froot Loops and a slice of yellow pepper today, not bad for a sick day. Did I mention we have yet another cold/cough combination going on? Well, we do, so good thing we have this new high-calorie nutrition plan to play with.

The kids are off from school next week so at least they will have one more relatively exposure-free week to recover from whatever they have now before going back. I had some fantasy that we were going to use this winter break to teach Lemon how to swallow pills. Hah. I'm sure we'll have time some day. Maybe we can do it this spring, right around when we're going to try and potty-train Lime. That should make for a soothing month or two. I already have a sense that 2018 is going to be another eventful year.