Monday, November 26, 2018

Week 275: Road tripping

Not to get too self-congratulatory, but I believe this may be our family's first trip where we didn't forget something important. I always feel like we couldn't have forgotten anything important, because it always looks like we're packed for intergalactic travel when we leave town even for a night. Inevitably, though, something small gets left behind. This time, though, I actually got everything. You might reasonably suggest that I should develop a packing list of some kind that lists all the CF-related stuff that we need to bring on every trip. You would be correct that this would be a good idea. And I fully intend to do it, right after I set up my calendar reminders about changing out the filter on the compressor for the vest.

Speaking of changing out that filter, holy smokes. Um, yeah, I guess it really did need to be changed (top = new, bottom = old). Don't worry, though. All that sketchy-looking white stuff that's on the filter? It's almost all pure salt from the 7% saline we nebulize twice a day. Honestly I'm amazed the thing still runs given how much salt must be inside it.

Anyhow, in addition to having everything we needed with us, Thanksgiving was downright awesome. We went to Minneapolis and stayed at a nice Airbnb. We spent the bulk of the weekend with some of my oldest and dearest friends, who now live out in CA but were in Minnesota to see their relatives. It reminded me so much of the Thanksgivings of my childhood--a pack of children running wild, tons of food, laughter, conversation, tryptophan comas. Just fantastic, by far the best Thanksgiving we've had since we moved to Wisconsin.

We also took advantage of our time in Minneapolis to do other fun things, such as visit the science museum, the aquarium, and one of Lemon's oldest friends (saying this cracks me up). His little buddy moved to Minneapolis over the summer, but they picked up right where they left off at the end of 4K, disappearing into the attic playroom for several hours. Lemon was very gleeful about the fact that we didn't know what they were doing while they were up there. Evidence strongly suggests that they were decorating old shoe boxes with glitter glue and markers, but I couldn't say for certain.

The only little dark cloud in the sky at the moment is weight gain, or rather the lack thereof. Despite having been healthy for a month, Lemon has not gained back even an ounce of the weight that he lost in September and October. I went back up to 3 cartons of formula a night, along with my trusty DuoCal, to see if that would help. No luck so far, and now I'm burning through my stash of formula because our order was changed to 2.5 cartons per day, so to do 3 I have to use up what I had saved from the times he was sick. We have a clinic visit coming up in a couple of weeks so if we haven't gotten anywhere by then I think I will have to ask the dietitian to change our order again. Lemon is still in around the 60th percentile for BMI, so definitely not in any serious trouble, but he does keep getting taller. And when you get taller without gaining any weight, well. We've played this game before. I think the great lesson from this fall is that fall is not a good time to back off on tube feeds. Previous seasons that we have lived through seem to suggest that spring, summer, and winter are also not good times to back off on tube feeds. I'm beginning to detect a pattern, I think...

Monday, November 19, 2018

Week 274: Cadence

Treating CF means keeping up with a lot of things. I would give us a gold star for keeping up with the things that happen on a daily basis. We do all the treatments with the vest. All the inhalers. All the nebulized stuff. All the pills. All the enzymes. Every day. I would even go so far as to say that we (well, Papa Bear specifically) are pretty good at the stuff that needs to happen every month, like the calls with the pharmacy to get refills on all the meds. We even hit the quarterly stuff pretty solidly, which is mainly our clinic visits.

But, I think if the interval gets longer than quarterly, things start to get a little raggedy. For example, changing the g-tube button. I think that's supposed to be every 3-6 months. So, I guess maybe I should do it quarterly and then I would be good at it. Instead, I usually just wait until the button is so old that it can't be connected to an extension anymore, or until Lemon pops it out while doing acrobatics, and I take that as a sign to replace it. And the nebulizer cups and masks. Those are supposed to be replaced every 6 months. I always think _this_ will be the time that I note something on some kind of electronic calendar so that it will remind me in 6 months that it's time for a fresh set. Then, inevitably, I forget to set the reminder, so I just keep going with the set we have until the masks literally crack apart from being sterilized too many times. I tell myself that this cracking always happens right around the 6-month mark, so it's a good indicator, but actually I have no idea. It could be 6  months, but could just as well be 4 or 10, I really couldn't say.

Then there's the stuff that happens even more infrequently, like annually. For example, our annual visit to the GI doctor. Of course, doctor's calendars are only open something like 6 months out, so you can't do anything convenient like schedule your one-year follow up as you're leaving your current appointment. You are told to call back in 6 months. Hah. I did eventually remember to call, but by the time I called the doctor's calendar was filled up for 3 months, so we didn't actually get in to see him until this past Friday. As I had promised Lemon, it was a total nothing appointment anyhow. The doctor asked us how things were going, I told him, he pressed on Lemon's belly a bit, and we were off again. He does want us to repeat the liver function tests in December so we can see how Lemon is doing on the new dose of ursodiol, and then we can follow up in (you guessed it) a year.

The other thing that happens maybe even less frequently than annually is replacing Lemon's vest. He's had his current one for a long time. How long? Who knows. I had been looking at it every now and again and thinking he'd gained so much height that he probably needed another one. And then that thought would leave my mind as soon as I'd left his room. But, the vest company had a rep at the CF education day that I went to last weekend, and she gave me a flier with the 800 number on it and pictures of all the different patterns of fabric that they have. So, I finally managed to sit down with Lemon, get him to pick a fabric, and placed the order, which arrived today. Lemon was thrilled, and I could tell watching him do his therapy today that the new vest really fits him much better than the old. So, I'm glad I finally got myself together to do it. Also included in the box with the vest was a new filter for the compressor that goes with the vest. Here's some new information I just learned. That filter is supposed to be changed...quarterly.

Monday, November 12, 2018

Week 273: Meet a hero

You know what's great after a lot of traveling? Not traveling. Doing laundry and putting your clean clothes in the dresser rather than back in the suitcase. Being able to honestly respond "Nope!" when your 3-year-old asks, "Mama, are you going on another trip?" 

One really nice thing that I was able to do here at home was to attend our annual CF Family Education Day on Saturday. I always love the chance to catch up with the other families, the people who know exactly what my life is really like and that I never see, even though we live in the same state. It's great to hear in person how everyone's kids are doing, and swap tips, advice, and tears. As an added bonus, we got to taste free samples of the new s'mores flavor of Pediasure. Verdict: pure nast, kind of like a liquid PowerBar. But, some kids love it, apparently.

Another great feature of the day was the opportunity to meet an adult with CF. This year's speaker was a man from WI who is in his mid 30's, married, works as a phys ed teacher and basketball coach, and is 6'1", 195lb (!!!). He had an incredibly positive outlook on life and it was so wonderful to see a real-life example of what could be possible for Lemon. 

Perhaps the highlight this year was the chance to meet Robert Beall, the former president and CEO of the CF Foundation. He was with the foundation for an incredible 35 years, retiring in 2015. One of the things he brought with him to set the stage was a sort of medical manual about CF that was published in 1965. Suffice it to say, the picture then was unbelievably grim, and the photos of the children in the book were absolutely heartbreaking. 

But, there were a group of desperate and committed parents who wanted to push things forward. They started incredibly small, with a single research grant of $10,000. When Dr. Beall joined the foundation, things were incrementally less grim than in 1965, but not much. Most kids with CF didn't make it past 10 years of age. The amount of change that has happened since that time (in no small part thanks to Beall's leadership) is staggering. To see Dr. Beall, who is now an older guy (and not very tall) be absolutely dwarfed by an adult man with CF, when there were no such people alive at the time Dr. Beall joined CFF, is so moving and gives me so much hope for Lemon's future. I feel very fortunate to have had the chance to see Dr. Beall in person and to shake his hand, given that he is now retired and doesn't travel much anymore. A true once-in-a-lifetime opportunity, and I was glad to be in town to take advantage of it.  

Monday, November 5, 2018

Week 272: Back to where you once belonged

I am back. In perhaps the most insane travel period of my post-kids life, I spent the night in each of the 4 time zones in the contiguous 48 states within a one-week period. San Diego, Denver, Madison, Indianapolis. I am done. No more traveling for a while. Papa Bear has been an absolute rock during all this insanity, but his reserves are pretty much tapped out, and the kids are definitely feeling like they need there mom around more. And I for one am done with being on the road and in hotels and all that. Not that it hasn't all been fun, spending a bunch of face-to-face time with my coworkers and having an absolute blast at the Indianapolis Monumental Marathon with my ace marathoning buddy, but man I am ready to just be HOME. Also I ran an all-time best of 3:43 an my legs are tired.

In spite of all of my gallivanting around, things seem to have held together on the home front reasonably well. All of the boys seem to have had a cold of varying degrees of severity, but Lime is almost completely well again, Lemon is very congested but otherwise in fine spirits, and Papa Bear is thoroughly exhausted but may yet pull through. The cats are still present, if slightly starved for attention.

One interesting development that appears to have taken place is the onset of some nutrition lessons at Lemon's school. When I got back from Indianapolis on Sunday, I took the kids grocery shopping, and asked Lemon if there was anything he wanted me to get for him for his lunches. He informed me that he wasn't going to drink juice boxes anymore, because juice was bad for his teeth. He also said that he was done with chips, since they are not healthy. But, juice and chips are the only things he reliably consumes during the day, and we need every calorie! I totally appreciate the overall intent, but I feel like some recognition of the fact that everyone has different dietary needs might also be in order. After all, in spite of the juice and the chips and the tube feeds, we are still pounds away from where we were before school started, and we're desperate to regain every ounce. Fortunately school conferences are coming up in a couple of weeks so I'll have a good opportunity to discuss with Lemon's teacher.

Speaking of discussions with Lemon's teacher, I have noticed that it is now November, and back in July we thought we were going to have a meeting about Lemon's 504 plan in October. I guess that ship has sailed, but I suppose now that I am actually here for a couple of months I should try to get something on the calendar before the end of the year.

Finally, I know you all have had it coming at you from every possible direction already, but the midterm elections are tomorrow. VOTE.