Week 167: Trick or treat

As you can probably tell, since I'm awake after 7pm, we are no longer doing our every 8 hours around the clock IV routine, which is a good thing. At our clinic appointment on Wednesday, the doctor and I agreed that Lemon had made a lot of progress (including gaining back some of the weight he'd lost), but wasn't quite back to where we wanted him to be in terms of respiratory symptoms. We decided that we had better be really sure we'd beaten back whatever was causing all these problems, and the best way to achieve that was another week of IV antibiotics. However, since Lemon was doing much better, the doctor felt that we could go down to every 12 hours instead of every 8, which has made a sort of amazing difference in my energy level. It's still a big to-do, and adds a lot of stress and a bunch of extra things to do every day, but is so much more manageable.

We're getting reevaluated again this coming Wednesday, and hopefully then they'll pull the PICC out and we'll be done with IV antibiotics. I say hopefully because Lemon is, I would say, 95% better. He still is coughing just a smidge more than what I would consider his baseline, and that cough sounds a bit more productive than I would ideally like. Of course, Lime is also coughing a bit and has a runny nose, as does pretty much every other human resident of Madison at this time of year. So, we'll see.

As an aside, running IV's at home makes you acutely aware of just how much plastic is used in modern medicine. The amount of garbage we're creating is just staggering. I have always thought of myself as an environmentally conscious person (recycling, composting, etc), but no number of LED light bulbs can possibly offset the amount of waste from even one course of IVs. I feel like I'm taking out the garbage twice as often right now as I normally do. It doesn't sound like much to write it down, but all those syringes, all that packaging, the gloves, the tubing...it just adds up somehow. And then there's still all the normal stuff, including one kid still in diapers and a disposable tube-feeding bag every night. Yeesh. Please be extra good about reusing things this week on my behalf! 

In the mean time, we are doing everything we can to get Lemon's life back to normal. He's back at school, with his PICC tucked away inside a long-sleeved shirt. He went trick-or-treating tonight while his evening infusion was running, with his IV pump tucked away in his backpack and tubing running from the backpack down the back of his shirt to his arm. In typical Lemon fashion, he was absolutely thrilled about wearing his Superman costume, and was delighted to go out with Papa Bear and collect candy. When he got back to the house, he and Lime were allowed to have a small sample of the loot. Lemon took about a half-dozen licks of a lollipop and ate one Milk Dud. Lime, on the other hand, took one bite of a Reese's peanut butter cup, gave me a look that clearly said, "This food has existed in the world for my entire life and you didn't tell me until now????" and stuffed the entire thing into his face. Good thing we didn't have very many trick-or-treaters at our door this year, so we have a bunch of extras.

So, that's a wrap on an October that was more exciting than I think any of us could have imagined. Fingers crossed for a more peaceful November!

Week 166: Unstable equilibrium

Having a kid with CF means living in a state of unstable equilibrium, like being in the car at the apex of a hill on a roller coaster. Even if at that moment on the apex you are sitting still, in only takes the slightest push in either direction to send you flying off down one side or the other. And last week's stomach bug was all the push we needed.

On Tuesday morning, Lemon started coughing again. I had a feeling this was a very bad sign, and contacted the clinic right away. We got a prescription for a further two weeks of augmentin, but the augmentin just was not up to the task of getting things back under control after we'd gone so far off course. Lemon was weakened by the stomach bug, and his throat was undoubtedly inflamed by all the vomiting he'd done. So, when he started coughing again, he started vomiting again, and it wasn't far from there to dehydration and a sort of downward spiral.

I called the clinic again on Thursday morning to try and get him seen. I spoke to a nurse at 9:45 who agreed that he probably should be seen.  She started scanning the schedule to see what appointments they had available. She found one and then said, "oh, but this one won't work, its at 10." Luckily, we live 2 miles from the hospital, so I said, "no problem, hold that spot." I hung up the phone, tossed Lemon in the car, and high-tailed it over. The doctor that we saw took one look at poor Lemon, huddled in my lap with dry lips, sunken eyes, and a big cough, and said "You're not going to like this, but I think we have to admit him." I wasn't surprised, since I agreed with that assessment--we needed a pretty serious intervention to get things turned around, both from a hydration perspective and to actually kick whatever's been plaguing Lemon since mid-September. He sent us home to pack up and get organized, and we were back at the hospital by 2 to get into our room.

They placed a peripheral IV right away. Some of you may remember from a few hospitalizations ago that it took the strength of 6 adult human beings to restrain Lemon enough to get a line started. This time, someone had the clever idea to use a technique I've only previously seen used on one of our cats while at the vet--they basically wound Lemon up in a bed sheet so that only his head and the relevant arm were exposed. Using this strategy, only 4 people were needed and the placement actually went pretty fast and smoothly. They got a fluid bolus into him right away and he perked up perceptibly. They also started IV Zosyn to start tackling whatever was in Lemon's lungs.

On Friday, Lemon had his 3rd PICC placed. This time, they did it under conscious sedation rather than general anesthesia. I got to stay with Lemon through the sedation, until things were pretty well underway, and I rejoined him as soon as the procedure was over. The hardest part of the whole thing was preventing him from eating or drinking until 1pm when the procedure started. We've often wondered what it would take for Lemon to be actually hungry--it turns out that taking in basically zero calories for a solid week and losing 10% of his body weight will do it.

We pretty much insisted that they let us go home on Saturday. Lemon was fully hydrated and doing much better overall. We've done home IVs before, so that gave the team at the hospital the confidence they needed to let us go. The only "small" hiccup that we've encountered being home is that the infusions, which are supposed to take 30 minutes each, are instead taking 60 minutes each. We've tried a new pump and new tubing with no improvement. Given that I'm administering these 3 times a day, at 6am, 2pm, and 10pm, the extra 30 minutes really matters. But, no one seems to have any idea what's causing the problem and their solution seems to be that since it's infusing and we're managing, we'll just ride it out. Easy for them to say, they aren't the ones saying up til 11:15 running one treatment and getting up at 5:30 to prepare for the next. We're being seen again on Wednesday morning and assuming Lemon is back to baseline, the PICC will come out then, so it's only another few days of this madness--which is a good thing!

Week 165: Go with your gut

This week got off to a promising enough start. Lemon came off antibiotics on Monday and it seems like the solid month of drugs might have put Something Sudden back in its place. Wednesday morning, Lime had his 15 month checkup--he's still short (6th percentile) and a little bit stout (12th percentile), but is sticking right on his growth curve and hitting all his milestones and whatnot. And, as the PA assures me at every appointment after she measures him, "Boys can grow until they're in college!" Or, he might just be short. Either way, it's OK by me.

I am now searching my memory of Thursday to see if there were any signs that, in retrospect, should have alerted me to the impending storm. I don't think so, but perhaps the overall absence of things to worry about should have clued me in. On Friday morning, Lemon vomited after his vest treatment. But, that happens from time to time and we didn't think too much of it, he seemed totally fine afterwards. The rest of Friday seemed pretty much OK, too.  Neither of the kids ate much dinner, which in retrospect was a small mercy. Because things became decidedly not normal after that.

There's no need for me to go into any further details. For those of you with kids, you know what having toddlers with a stomach bug is. For those of you who don't, let's just say my fondest wish right now is that I could somehow use two pairs of long-handled tongs to pick my house up from its foundation and dip it in a vat of boiling Lysol.

Thankfully, the storm seems to have largely passed. As is the nature of these things, symptoms progressed on a course from the top of the GI system to the bottom. Lime still has very little appetite, but whatever he does put in has been staying there long enough to make its exit through the traditional route, even if at a somewhat more rapid pace than usual. Lemon is getting a bit of nutrition through his tube (although we've temporarily stopped boluses and went down to one can a night over the weekend; we are, with fingers tightly crossed, attempting two cans tonight) plus whatever bits and pieces he eats during the day, which is currently less than usual, which isn't much to start with. He's also really struggling to tolerate his therapy--I have to imagine when your stomach is a little off kilter, being shaken violently for 30 minutes is not a soothing experience. We've definitely learned to take him seriously when he says he doesn't feel well during treatment, and are lowering the intensity of the shaking a bit until he's on more solid ground. Of course, we don't want to back off too far lest something decide to settle in his lungs, so it's a balancing act as usual.

All in all, this stomach bug is a totally normal thing, in its way. All kids get stomach bugs. Things are pretty much horribly gross until the thing runs its course. And then it's over. But it has reminded me how fragile Lemon's health is. The weight that we've worked so hard to put on him has absolutely melted away over the last few days. At least with the tube I can feel confident that we can put it back on again, and fairly quickly at that. But it is still a stark reminder of how far from well he really is--including this "regular kid" thing, he's been sick for 5 weeks with hardly a break. And it's only mid-October.

Week 164: Like riding a bike

It turns out that you really do remember how to ride a bike, even after a very prolonged hiatus. In honor of my birthday, one of my dearest friends made the trek out here to the far reaches of civilization to spend a few days roaming the Wisconsin countryside. And guess what--it's gorgeous! It's been such a treat to spend a weekend immersed in one of my favorite pass-times. I'm clearly not in the shape that I was once in, so this week's post will be long on pictures and short on words so that I can get some rest!

It seems that, although my friend is not really a kid person, Lime managed to worm his way into her affections:

We even managed to get a couple of pictures of all four of us where a substantial percentage of the family was looking at the camera and/or smiling at the same time. Lemon's last day of his two-week course of augmentin was today, so we'll have to see if we've managed to kick Something Sudden to the curb now. I would say that at this point he's pretty much back to his respiratory baseline, so at least there's some degree of hope that he'll manage to sustain it without more antibiotics. Fingers crossed.

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...

.