Week 163: Cyclone

There were no extreme weather events in Wisconsin in the past week, although you would reach the opposite conclusion if you based your analysis on the inside of my house. Luckily, Papa Bear returned home this morning so with any luck I will be able to take some corrective action over the next several days. Overall, the week of solo parenting was very busy but fun in its way. We all tried one another's patience at times, but we survived. Lemon definitely noticed Papa Bear's absence in a way that he hasn't before, and that led to some less-than-desirable behaviors. And a lot of extra laundry. Lime (aka world's biggest mama's boy) was much less affected. He mainly seemed to notice that I was more tired and had less time for him than usual, which was not to his liking. Ah well. Once I return from my 3-day spa retreat I should be good as new (wouldn't it be fun if that were reality?).

Lemon's cough appears to be fading. I don't want to get ahead of myself, since that rarely ends well, but I do think he is mostly better--certainly more of an improvement than we saw the whole time we were on levofloxacin. He is still not quite at baseline, but I would say he's 90% of the way there, and when he does cough, which is pretty infrequent now, it sounds mostly dry instead of the big wet sound he had last week. The main test will of course come in a week or so, when we come off the oral antibiotic and see what happens.

Augmentin has had a bigger effect on Lemon's digestive system, so we're being diligent with the probiotics. Of course, now that Lemon is using the potty, he likes to look at and discuss all of his byproducts, which can be pretty humorous if your sense of humor is inclined toward the scatological.
The whole fiasco with the levofloxacin dose and then the switch to augmentin does make me wonder, though--are we basically in a situation where if the antibiotic dose isn't strong enough to screw up Lemon's gut, it isn't strong enough to kill what's in his lungs? It sure seems that way, for better or worse. So I think the next time we try levofloxacin, we are going to have to really insist on the higher dose, gut be damned. And, at least at the current level of gut disruption, it doesn't seem to be causing Lemon any discomfort, so aside from things being a bit messier, it's not a huge deal.

I think that's about all the news that's fit to print this week, there may be more but I would have to have slept considerably more in the last 24 hours to remember it (oh yes, I did forget to mention that Lime now thinks it's a good idea to wake up and scream from 4-4:30, followed by his brother waking up for the day at 4:50). But, guess who's getting up with the kids tomorrow morning at whatever hour they select? Hint--it isn't going to be me!

Week 162: Stick to the script

Well, what's new? What isn't?  Where to even begin...

I suppose it makes sense to begin with Wednesday. Things were looking pretty good. For the first time ever since both have been ex utero, both children slept uninterrupted in their own beds until after 6 a.m. I had forgotten what that kind of night felt like. It was incredible. I should have known that this miraculous event would be counterbalanced by some equally unprecedented but far less pleasant event. We made it through a pretty normal day, everything seemed deceptively fine. It was bed time, the kids were in their PJ's, and we were just about to begin actually getting people into beds. Lemon thought it would be funny to shuffle around in Papa Bear's slippers while carrying a basket. And it would have been funny, had he not tripped over the slippers, clung for dear life to the basket, and taken the entire weight of the fall on exactly one of his front teeth. Tears, blood, ice, phone calls to Nona (who, among her many secret superpowers was at one time a dental hygienist), etc. Long story short, no more front tooth.

I'd been vaguely meaning to find a dentist for Lemon, since he's about old enough, but I'd been putting it off "until things quieted down." This was sort of the opposite of "quieted down," but at least it forced my hand. We went to the dentist, who complimented Lemon on doing such a professional extraction job, taking out the whole root of the one tooth without even so much as chipping its neighbor, and told us to come back in a couple of months for a cleaning, once wound has had a chance to heal. And now Lemon will look like he's a pirate until sometime in 1st grade. Awesome!

The other thing we've been wrestling with is Something Sudden. When we left off last week, we were trying a round of levofloxacin to see if that could shake it. In short, the answer appears to be "no." Lemon is better than he was when Something Sudden first appeared, but is by no means fully well. He still has a pretty wet-sounding cough, which is not a great sign given that we've been on oral antibiotics for 10 days already. So, today, I got on the phone with the clinic to figure out a new plan.

In order for you to appreciate this story, I have to take a step back. At our last clinic visit, the nurse practitioner who has been seeing us recommended increasing the dose of levofloxacin that we get from 5mL per dose to 6, since Lemon has grown so much.  Fine. When I called in to the clinic 10 days ago to get our prescription, the doctor on call suggested using 5mL. I said that our nurse practitioner had recommended 6, he said 5 was fine and would have less GI side effects. Fine. We went with 5.

Fast forward to today. Our clinic calls me back to offer two alternatives: the first was to stick with levofloxacin, but go up from the 5mL/dose that we settled on 10 days ago to the 6mL dose that was recommended originally, or to switch to augmentin for two weeks and see how that goes. The nurse asked me what I preferred. How on earth am I supposed to have a preference? Isn't it the clinic's job to draw on their training and experience and make a recommendation? I ended up deciding to go with augmentin, because it seems to me that levofloxacin isn't working well enough, and I'm not sure that a 20% increase in dose will make the difference. So, we'll see what happens I suppose.

Just in case you imagined that the next week might be dull, Papa Bear left this morning at 5 a.m. for a one-week trip (his longest since either of the kids were born) and our morning nanny had surgery on her foot and is out of commission for at least the next few days. Fasten your seat belts...

Week 161: Suddenly

On Wednesday of last week, things were great. Lemon was feeling good, the cold/allergies that were bothering him and Lime had largely cleared up, and we had an awesome visit at the CF clinic.  Just look at this growth chart, people--this guy is in the 78th percentile for BMI. All our struggles with the tube feedings have paid off. His lungs sounded great, we made our appointment for a follow-up in 3 months, and we were out of there. 

Wednesday night, we got the first glimpse of a new character in our family's little drama, a beast I will refer to as Something Sudden.  Because although Lemon was fine on Wednesday during the day, by the evening he had a bit of a cough, then he threw up during the night, then on Thursday during the day he began coughing more and more, and became increasingly miserable and feverish. By 5pm, we decided to chuck our  "wait 5 days before calling for antibiotics" care plan straight out the window and got on the phone with the clinic. That evening, I ran (literally) to Walgreens to pick up a two week supply of levofloxacin, and we got the first dose into him through the tube while he was asleep on Thursday night. 

It took a good 24 hours, but things began to improve slowly but surely.  The fever is gone now, but the cough is not. It is definitely better, but we are by no means at baseline and are keeping up with 3 treatments a day for the time being.  I'm guessing we're going to be doing levofloxacin for a month here in an effort to turn Something Sudden into Something of the Past.  And I can't help but think that this month is still only September.  But, I'm not going to dwell on it. We'll do our extra treatments and get through this two week course and see where we are.


In other news, we had a dear friend from Boston come to visit us this weekend. I would say this is the first time in his life that Lemon really understood the full implications of having a visitor (ie someone who has new games to play, reads the same old books in a different way, inspires boring parents to leave the house and do some new activities, etc). He soaked it up, Lime followed his lead, and we all had a great time.

Last but not least, our house is now blue. As has been seared into the memory of those of you who have seen it in person, our house came to us in a sort of pink/peach color reminiscent of slightly faded salmon mousse, with fuchsia accents and black shutters. No longer! It is now "festoon aqua." I will post a few before and after pictures next week, when everything is  done, but you can get a sneak preview in the background of one of the shots below...

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Week 160: Work it

It's hard to believe, but this week it will be a year since I started my "new" job as a work-from-home medical writer. I can say with honesty and conviction that working from home is the only reason I was able to work full time this year. I am beyond lucky to be able to have this kind of job, so that I can feel fulfilled, contribute to our family's bottom line, and still give Lemon (and Lime) the care that they need. A short list of things that I have done while on a conference call (on mute, thankfully): breastfed a baby, changed a diaper, done a workout on an elliptical trainer, served a snack, administered a breathing treatment, delivered daily bolus tube feeds, emailed various healthcare providers about various things, and folded a seemingly infinite number of small pieces of blue clothing. Where would we be without multitasking? That, plus the time I save by not commuting (or showering in the morning, or getting dressed into "real" clothes), makes a huge difference in our lives.

Working from home does have its downsides. Like some (many) days, you don't leave your own property at all, and if that happens too many days in a row you can start to feel a little stir-crazy. My office is in the basement, so on some days I feel like I barely see the sun. You also miss out on all the social aspects of work. It's really strange to have worked with a group of people for a year, and not to know any of the most basic details of their lives outside work--where they live, what their spouses' names are, how many kids they have, what their favorite pass-time or sports team is. On the other hand, it does eliminate a lot of the politics of working in a group. There's no water cooler to schmooze at, no drinks to be gone out for (or not) after work, no way to dress to impress. If your work is high quality and is done on time, people like you and think you're doing a good job. Imagine that!

In other news, I started taking Lemon to school in the bike trailer, which he absolutely loves. He started a tumbling class on Sunday that he also enjoyed, so much so that he couldn't bear to sit still and listen to the teacher's instructions, he just had to jump up and down on the mats in the gym while she was talking. He was very proud of himself for being able to walk backwards down the "balance beam" (strip of foam on a mat) and jump off the end. No photos this week as it was all too exciting for me to have any free hands, but hopefully next week.

Lemon's cough is still not quite gone. It's been 10 days or so, and we're able to call for antibiotics after 5, but we haven't felt the need to do it yet. In the past, he's been much sicker when we've called--some combination of coughing through the night and puking usually puts us over the top, and neither of those things is happening right now, thankfully. He actually hasn't been coughing at all in his sleep, which is weird for him. But he coughs several times a day, and still has a bit of a runny nose. Then again, the same goes for Lime who does not have CF to contend with. I feel like if Lime hasn't kicked it yet, it's not reasonable to expect that Lemon would have. In any case, we have a clinic visit coming up on Wednesday so we can discuss the plan with them then.

Lime continues to surge forward into toddler-hood.  He now says "Dada!" with great emphasis when Papa Bear comes home from work. He picks up books in his chubby little hands and thrusts them at anyone in the vicinity who might be able to read, but often lacks the patience to sit through a whole book before he's off running again. He has mastered a bunch of physical skills much earlier than Lemon did, I think because he's watching and learning from his brother. He can climb onto a ride on toy and push it along, climb into the Cozy Coupe, and climb the slide on our swing set. His appetite knows no bounds, and he will now cling to the base of his highchair and wail if it seems like food is taking too long to get ready.  He does a little foot-stomping happy dance when he sees food finally arriving.

One last little piece of news for this week is that on Saturday, I ran another half-marathon, sneaking out of the house at 4:30 a.m. to get to the race (which, sad to say, did not even feel like getting up particularly early!). The conditions were perfect and I ran a much faster time than I did during the heat-fest in June. I'm starting to feel vaguely ready for the Madison marathon this November!

Week 159: Laborious

Lemon started 3 year old nursery school on Friday. After all the thought and preparation that went into it, the day itself was about as non-dramatic as you could imagine.  I loaded Lemon into the car, we went to school, we got there 15 minutes early because I got the start time for the early morning session wrong, we played in the playground for 15 minutes, and then I dropped him off at the room for the early drop-off, with a teacher he'd never really met before.  She told him it was time to wash his hands, he stuck them under the water like it was no big deal (what??????) and hustled off to play with all the exciting toys in the classroom.  I said, "Good bye, have fun, be good!" to his receding back.  And that was it.  He had a great day, lots of his little pals from last year are in his class this year, he took his enzymes from his new teacher without a fuss, and collapsed on the kitchen floor from exhaustion when we got home.  Success!

I would say that it was an unqualified success, were it not for the fact that by Saturday he had a cold.  At least, at first we thought it was a cold.  Now we think there's a possibility that it might be allergies again (ragweed is pretty bad in our area right now).  But, whatever it is, it is distinctly unfriendly.  It's been our usual cycle, with the runny nose and sneezing rapidly progressing into a bad cough.  We've had to cut the nightly tube feeds down to one can a night, delivered very slowly, so that the feed stays in despite the coughing.  We're doing all the things we can do: the vest 3 times a day, doubling up on Flonase and Zyrtec, running the air purifier at night.  Hoping.  Hoping that we don't have to go on antibiotics in SEPTEMBER. 

Lime has been affected by whatever this is as well--I don't think that really helps us figure out whether this is a cold or allergies though, since last time Lemon had allergies, Lime had them too, and last time Lemon had a cold, Lime had it also.  What I do know is that between one kid crying intermittently all night, and the other kid coughing intermittently all night, there isn't much night left before morning comes around! Complicating the picture further, I discovered today that Lime decided to get another tooth. I've been watching for his lower lateral incisors to finish coming in, or maybe the upper canine teeth. But no, that would be too easy.  He opted for the upper molar instead.  No wonder he's been sad!

Anyhow, it seems like with Labor Day here, summer and its relative healthy and carefree days are already slipping behind us.  Winter isn't here yet, but every cough I hear reminds me that it is coming.  I don't mean to be bleak.  I'm looking forward to cooler weather and fewer mosquitoes, to running a few more races, and even to shoveling the driveway.  I just wish I could look forward to these things without wondering what will accompany them.  At least we have many weeks of fall to prepare ourselves.

Week 158: Fall color

And just like that, fall is upon us.  Our neighbor's red maple is showing its first hints of color.  The mornings are getting chillier.  Not so chilly that one can't go outside and ride one's tricycle in one's favorite short sleeved PJ's, should one chose to do so, although those days are coming. Honestly, I am already dreading the approach of winter and what it may have in store for all of us, but I try not to think about it too much.  Summer has been so, so good to us and I don't want to let it go.

This week, we have Lemon's orientation for 3-year old preschool on Wednesday, and his first day of school is Friday. I know that he will love it and that it will be good for him, and those two things make it worth whatever the risks are.  His new classroom will only have one teacher (as opposed to two last year) so I don't really know how she will manage to get enzymes into him at snack time with all the other kids milling around, but I suppose she will work out a plan.  I need to work with Lemon's nutritionist to come up with a plan to get extra calories into him on school days, since he will miss the bolus he usually gets with him morning snack while he's at school.

Speaking of which, we were scheduled to go to the CF clinic for a check-up on Wednesday before the orientation.  As many of you will recall, Lemon's doctor left our hospital about 6 months ago, and while they've been searching for his replacement, we've been seeing the nurse practitioner.  We were supposed to see her tomorrow, but I got a call this afternoon from the clinic saying she's going to be out, and that we will instead be seeing some other nurse practitioner.  One who's never seen us before and doesn't specialize in CF.  Yeah, I don't think so.  How is it supposed to be worth our time, and the risk of infection that every hospital visit brings, to see a practitioner that doesn't know us or our disease?  Suffice to say, I'll be calling the clinic back tomorrow morning to reschedule.



Other than that, I'm filling some of my copious spare time searching for a new afternoon babysitter for the boys, since our old afternoon babysitter just started her fall semester and her schedule doesn't allow her to take care of the dynamic duo anymore.  I feel like I've gotten mellower about this process, too--back when we first moved to WI, I led with CF--it was in the ads that I placed that our son had "a medical condition," which I'd discuss with candidates when I interviewed them.  Now, I don't lead with it anymore.  It's not in the ads, and I do ask if candidates would be comfortable giving a kid medication and can be scrupulous about hygiene, but that's it.  CF doesn't define who Lemon is, and I feel like leading with it just creates unnecessary anxiety.  Hopefully we'll find someone soon, or my own anxiety about actually being able to do my job will be well-justified!

Week 157: The first three years of life

We made it.  Lemon is 3.  What a year he (and we) have had.  Weeks and weeks of oral antibiotics.  Two hospitalizations and two courses of IV antibiotics.  A surgery.  Something like 400 hours of time spent in the vest.  4.5 liters of nebulized medications.  Over 100 liters of Pediasure. And all the usual shenanigans of having a bright, active, curious, opinionated two year old--including a broken arm.  And an infant doing his thing alongside.  I had every anticipation that the 0/2 year was going to be a doozy, and it did not disappoint.  I am (mostly) not disappointed to have it in the rear view mirror, and am looking forward to seeing what the 1/3 year has to offer.







Lemon and Nona have birthdays just a day apart, so we had a joint birthday party for them on Saturday. Lemon was a bit skeptical about the consumption of birthday cake (cake being a food after all), but Lime really showed him how it was done.  

Lemon got lots of nice things for his birthday--a new backpack to carry to three-year-old nursery school in a few weeks, a new tricycle, some more Duplos, and so forth. 

The birthday celebration continued at Fire Station Fun Day at our local fire station.  In spite of his fascination with fire trucks, it took Lemon a while to work up the courage to actually get up close to one and climb inside.  Once he warmed up to the idea, though, he had a good time.

One change that we've really seen just over the last week or two is the blossoming of the relationship between Lemon and Lime.  Lemon has figured out that Lime is his #1 best audience and will crack up into peals of baby laughter if Lemon does anything even remotely amusing.  He's also figured out that Lime has the potential to be fun to play with.  Unfortunately, he hasn't fully mastered the whole concept of "playing with" someone, so "playing with" will quickly devolve into either "grabbing from" or "sitting on."  But, the potential is there and I'm looking forward to watching it grow over the next year.

Earlier today, a friend of mine posted a picture of himself and his brother getting ready to run a marathon together, and it's really stuck with me, but it took me until mid-way through mowing the lawn to figure out why.  It stuck with me because this is something I want so much for my two little guys--to grow into the kind of men who will run marathons together in their 40's.  We CF families live very much in the present, and I try not to dwell too much on what the future may bring. But during this birthday week, I can dare to dream a little. Here's wishing for health and happiness for all of you, and all of us, in the year to come.