Week 130: Something vicious

On the plus side, the new nanny started and so far she seems great.  She's very engaged with the kids when she's here, playing with them and reading to them.  Since she started I even had, oh, I don't know, let's say two relatively normal days.  They felt unbelievably luxurious.  Their sheer simplicity and ease should have been a warning that things could not stay that way for long.

Enter something vicious.  As in some sort of new, vicious bug that decided to infect Lemon just when we'd started to actually see some real weight gain from the ciproheptadine.  This bug is definitely different than anything we've had before.  Our pattern for the entirety of Lemon's life is that first he gets a cold, with sneezing and a runny nose.  Then we wring our hands and do extra treatments for a few days, until the cough sets in.  Then we do extra treatments for a while longer to see if we can kick it, which we've done once or twice.  Otherwise, we're calling for antibiotics.

Something vicious left us no time for hand-wringing, hemming, or hawing.  It came in without a runny nose--straight to cough on Friday.  We started extra treatments right away, but we weren't optimistic.  Saturday it seemed like perhaps it wasn't getting worse, until the evening when it became clear that it was.  On Sunday, Lemon was coughing as hard and as much as I've ever seen him cough in his life.  He also had a fever, which he has pretty much never had with any of his other respiratory bugs--he got up as high as 101.6F on Sunday afternoon.  Suffice it to say that, although our treatment plan says to wait 5 days to see if the cough improves, we were on the phone with the doctor on call by mid-morning Sunday, and started antibiotics in the early afternoon.  We're trying levofloxacin this time.  It's definitely helped a bit already--at least things are no longer getting worse, and they seem to be getting incrementally better. 

It kills me to see the weight we fought so hard to put on him just melting off in a matter of a few days.  We can barely get anything into him, and not everything that we get in stays in.  He has a very touchy gag reflex even when well, and when not well it gets even touchier.  We've stripped his medication and vitamin regimen down to the absolute essentials--basically just the antibiotic and enzymes on those few occasions that he expresses any interest in food whatsoever.  At least he's drinking enough water and juice to stay hydrated, but that's about it.  We have a clinic visit coming up on Wednesday, which was supposed to be the follow-up visit where we saw great results from the ciproheptadine.  Instead it will be a sick visit where we figure out if the oral antibiotic is doing enough, and see how much ground we've lost on weight gain in the mean time.

Yesterday, in the midst of all this, I got a call from the CF Foundation, wanting to do a survey about our CF center.  I never say no to anything having to do with CF, so I took the call and started answering the questions.  About 2/3 of the way through the survey, there was a question along the lines of "Overall, how is your child's health?"  Of the options, I selected "very good."  As soon as I said that, I thought, am I kidding myself here?  We're struggling continuously with weight gain, and we just started yet another round of yet another oral antibiotic to fight off one of the worst respiratory infections he's ever had, and the list of medications and supplements that we have to use multiple times a day every day just to cling to what we have is a page long.  I suppose as his mother I'm just not inclined to think of him as sick.  When he's well, he's so well, so full of life, bursting with intelligence, in constant motion.  We're hoping to have that Lemon back very soon.

Week 129: Wheels off

I feel like the past weeks have been a series of tests.  "Oh, so you think you have your life under control, do you?  OK, try doing it at the hospital.  OK, try doing it with home IV's.  OK, try doing it in a hotel room in Boston.  OK, try doing it when you wake up every morning at 4:15.  OK, try doing it when you wake up every morning at 4:15 AND everyone has a cold and you're running 3 treatments a day."  This week's iteration: "OK, try doing when you're waking up every morning at 4:15 AND everyone has a cold and you're running three treatments a day AND do it without the nanny that's been with you for two years." 

As you loyal readers will remember, back around week 113, our nanny had a bout of pneumonia, and unfortunately she never quite got back all of her strength after that.  Not only did she never fully recover strength, but her job has gotten progressively harder.  Lime continues to put on weight at a rather astonishing pace.  Lemon is all long limbs and sharp corners that are in constant motion.  It has been clear for some time that we were going to have to make some kind of change in our child care arrangements eventually, but we'd sort of been putting off dealing with it until things "settled down," whenever in the mystical future that might be.  But, our hand was forced this week when the nanny had yet another health issue arise and it became clear that things could go on no longer.  Her last day with us was Thursday.  Lemon, who has known her since he was 5 months old, doesn't really know or understand yet that she's not returning, but I suspect in the coming weeks he'll figure it out.  I do care about his feelings and whatnot but, OMG WE JUST LOST 25 HOURS PER WEEK OF CHILDCARE AND WE HAVE TWO FULL TIME JOBS AND AAAAHHHHHH!!!!

Ahem.  I mean, we responded in a totally rational and controlled manner, composing beautifully written advertisements and CARPET BOMBING THE INTERNET WITH THEM.  Luckily, we got quite a number of replies quickly, and I spent Friday evening and part of Saturday doing phone interviews.  One candidate goes to a church in our neighborhood and said she'd be happy to stop by our house before the Sunday service.  I said that sounded fine.  She seemed great (arrived on time, had a pulse, did not scare the kids), left a list of references, and said she could start right away.  I checked her references, they confirmed that their respective children were still among the living, and she's starting tomorrow.  Phew. 

I've spent much more time hiring people to do jobs that are (sorry, if any of you are reading this) much less important than taking care of my children.  But, honestly, this candidate seemed great both on the phone and in person, and I've screened a lot of babysitters lately so I do have some basis for comparison.  One of the great things about working from home is that I don't have to wonder how things are going.  I'll just know.  I'm planning to move my office from the basement to the bedroom at least for the next week or so, so that I can get her situated and get the kids used to her and be right on hand for any urgent matters. 

Aside from the nanny crisis, we kept up with 3 treatments/day for Lemon for a full week and he seems to have kicked the cold in about the same amount of time as the rest of us, so we're feeling good about that.  For the first time in his life, Lime expressed some enthusiasm for solid food.  I've tried every fruit flavor of baby food out there, thinking that's where he'd want to start.  Nope.  Carrots, people.  So, with any luck, at some point I'll get more than 2 hrs consecutive sleep for the first time in 7 months.  Who knows?

OK, next week, what else you got?  On second thought, please don't tell me.

Week 128: Early birds

For the past several weeks, Lemon has been waking up like clockwork every morning at 4:15 a.m.  Once he's awake, he comes to find me.  Since I'm still sleeping on a bed in Lime's room (because Lime is still nursing every 2-3 hours), once he finds me, he finds and wakes his brother.  And, we're all up and ready to start the day by 4:30 at the very latest.  Morning treatment is done by 5, and we've had breakfast and are downstairs doing Play Doh by 5:30 or 5:45.  I will now compose a short list of the people in our family for whom this schedule is working well:  . 

 As you can see, it's a pretty short list.  Lemon is a wreck.  He's a wreck when he wakes up, he's melting down by 7 a.m., and can't stay up much past 6:30p.m.  Lime is exhausted, too, and is ready for his first nap of the day around 6:15 a.m.  When Papa Bear is around, I tend to take a little nap myself when Lime is ready to go down .  That 45 minute snooze between when Lime goes down and when I have to get up for work is basically my salvation right now.  And, with Papa Bear out of town to attend Great Grandma Virginia's funeral, there were a few salvation-free days this week. 

I think what's waking him up is hunger.  He's up the earliest on nights where he doesn't eat a good dinner, and comes into my room talking about breakfast and asking to start his mask and videos because he knows that treatment is a necessary preamble to breakfast.  On the few nights in the last couple of weeks where he's eaten a solid dinner, he's slept later.  Where later is defined as say 5:30 or so, which is TOTALLY SURVIVABLE.  But it's a vicious cycle--he's less likely to eat dinner if he's exhausted at dinner time, and more likely to be exhausted at dinner time if he's gotten up at 4:15.  I'd being trying to implement a policy of serving milk with dinner, rather than a Scandishake, in the hopes that a lighter beverage (where "lighter" means a 2:1 mixture of whole milk and heavy cream) would encourage him to eat more actual food.  But as of tonight I officially don't care anymore.  If drinking Scandishakes at dinnertime breaks the early wake-up cycle, then he can live on Scandishakes until he goes to college.  And, knowing myself, I will stand firmly behind that resolution until the moment that I am well-rested enough to recover my principles, and which point we'll go back to milk at dinner and hope that doesn't re-initiate the cycle. 

Just to top things off, Lemon is a little sick at the moment.  Nothing that would send an ordinary parent into a tizzy, a runny nose and a bit of a cough.  We've just been down this road too many times already.  We're doing the vest 3 times a day and doubling up on Flonase and nasal saline to see if we can kick it.  If we haven't kicked it by Friday, I suppose we'll start our new treatment plan, two weeks of oral Cipro.  I'm a little discouraged that we're starting another round of this, but at the same time glad that we made it through the entire month of January without incident.  That counts for something, I suppose, and it's only 8 weeks until April.






Also, I made a really great cinnamon swirl brioche.  Because even when things are a little bit insane, you have to live.

Week 127: Off and on

This week, we're remembering Great Grandma Virginia, who passed away a few days ago.  I will never forget the first time I met her.  She eyed me critically from her position on the sofa, declared that I was tall, had good teeth and good child-bearing hips, and accepted me into the family immediately.  She always welcomed our visits, and never failed to deliver a few zinging one-liners when we were there.  One of my favorite memories of her involved a well-meaning neighbor of hers who Virginia often found annoying.  We were over for a visit when the phone rang.  Grandma Carol answered the phone, and it became obvious that she was speaking to the neighbor in question.  From across the room, at volume sufficient to be heard several blocks in either direction, Great Grandma Virginia (slightly hard of hearing) yelled, "I'm not home!" 

I love this picture of her and Lemon from a couple of years ago when we visited her, it totally captures the spirit of her interaction with him.  She was the last of our kids' great-grandparents, so she leaves behind a void in their lives, and ours, that can't be refilled.  We will always treasure our memories of her.  

Aside from this sad news, it's been a fairly normal week around the homestead.  We're continuing to experiment with ciproheptadine to try and figure out the best way to maximize its effects on Lemon's appetite.  Last week, we noticed that it had a really potent effect for the first several days that he was on it, but then the effect began to fade.  Our clinic had mentioned that a lot of kids cycle on and off of the drug in order to maintain its effects, but they hadn't commented on how long the cycles were.  Since it seemed like we were losing efficacy, I consulted the internet, and found out that there are a surprisingly large number of ways that people cycle this drug (and those were just the ones that I found).  One schedule that I saw mentioned several times was 5 days on, 2 days off.  That seemed to me to fit well with what we'd seen, several days of high efficacy followed by a taper, so we're going to try that schedule until our next clinic visit and see where it gets us.  We went out for our first family meal at a restaurant as a foursome, which was much less of a disaster than we'd feared.

In Lime news, he's figured out how to sit unsupported, and is pretty good at it although it certainly helps to have quick reflexes if you're serving as his support person while he's attempting it.

 I will try to avoid too many "time machine" photos, but in order to console the Patriots and their fans I feel compelled to post this side-by-side of Lemon and Lime showing their true colors during the playoffs.

A few other highlights from the week--some strumming,

 some fire-engine viewing,

 and some chilly winter walks.

For the first time in a very long time, I feel like our family had a regular week.  Some happy times, some sad, some lovely memories, some very early mornings, a lot of coffee.  Yes, of course, some treatments and medicines too, but I am so glad that at least for the last 7 days, CF has left us more or less alone to just be a little family in a regular house in a sleepy, wintery city in the Midwest.  I could do a few more weeks just like this. 

Week 126: Skin and appetite

I feel as though lately we've just been swinging back and forth on the pendulum that is CF, wrestling with digestion and weight gain for a while and making some small progress, then switching to respiratory issues as we try to battle another infection, then back to digestion again once the infection is gone.  We had our 3-week follow up visit on Wednesday of last week, to see how things have been going since the PICC came out.  The good (great) news is that Lemon has held his own in the respiratory category, so we're just sticking with his current treatment regimen and continuing our vigilant march through winter. 

The less great news is that we're really in trouble now on weight gain, with only 300g gained in the last 5 months.  For the first time, the clinic brought up the idea of placing a gastrostomy tube, which is a tube through the wall of the abdomen and into the stomach for delivering tube feedings.  Lots of kids with CF have them, but it's something I've been very much hoping to avoid.  As our last ditch attempt to get Lemon to actually put food into his mouth, rather than me having to pump it into him with a syringe, we're doing a trial of cyproheptadine.  Although first developed as an antihistamine, it's now used a lot for one of its side effects--it's an appetite stimulant.  We started it on Thursday.  Luckily it's a clear syrup, which Lemon objects to much less than the cloudy suspensions, because we have to give him 5mL 3 times a day.

The results have been immediate and dramatic.  Lemon has eaten more solid food in the last 5 days than in the entire month of December, I'm pretty sure.  He's comfortably sucking down two Scandishakes a day, whereas for the longest time now we've been struggling to get him to consume one.  So, fingers crossed that the drug will continue to work and he'll put on some decent weight before our next follow-up in a month. Then, we can put the idea of the G tube on the back burner again for a while.  I will of course do it if that is really what it takes.  We need Lemon to gain weight for his long-term growth and health.  I would just much rather solve the problem with food and eating if we possibly can, and I'm hoping this drug will help us get there.  We're also going to meet with a psychologist to talk about eating behavior, so hopefully with his chemically augmented willingness to eat plus some new strategies, we'll manage to stay on some kind of growth curve until his brain is no longer two years old.

Although the cyproheptadine was just one more new medication, it made me reflect once again on just how much medicine it seems to take for us just to maintain our "normal" these days.  I suppose maybe it's because the new drug is 3 times a day, so it adds yet one more event to our daily health calendar.  Our routine is now:

Morning: albuterol, vest, saline, Pulmozyme, probiotic, Zyrtec, ranitidine, cyproheptadine, multivitamin, vitamin D

Mid-day:  cyproheptadine

Evening: albuterol, vest, saline, Pulmozyme, Zyrtec, ranitidine, cyproheptadine, vitamin D, iron, nasal saline, Flonase

Papa Bear figured out that the routine totals 32.5mL of oral
medicines and vitamins a day at baseline.  It's quite a lot when you're barely a 12 kg human being.  Not surprisingly, I've been thinking a lot about teaching Lemon to swallow pills lately, but I think that's a challenge for another week, or at least for a day when the children make the collective decision to sleep past 4:15 a.m.

Week 125: Limeade

How is it possible that Lime is already 6 months old?  He had his 6-month checkup today, and continues to be short and stout, although somewhat less short and somewhat more stout--he did a lot of growing over the last two months and climbed up to the 25th percentile for weight and 7th for length, a gain of 5 percentage points in each category.  He had nothing but smiles for everyone we saw at the pediatrician's office (well, except for the nurse who gave him his shots, but he forgave her quickly).  And, I got to feel like the ultimate modern working mom, doing a conference call from the pediatrician's waiting room while entertaining Lime with toys and walking him around to look at things. 

I feel like Lime's babyhood is sailing by far too fast.  All the drama of the last two months has made the time fly, and I feel like I've hardly had enough time to relish him the way he deserves.  I say that, and yet I am within 20 feet of him at pretty much all times, and often much nearer than that.  But it's still not enough.  He is my last baby, and once he is not a baby anymore that will be it.  And I'm not quite ready.  I've started to gradually get rid of some of the baby gear, which is bittersweet.  I'm looking forward to sleeping more, it is true, but it will be slightly heart-breaking when no one in my household has those adorable wrist fat rolls anymore.

Oh Lime, always know that you were born second but are never second in my affections.   I know it took you too long to get your own blog post, and there will be lots of times in your life when you will feel like you are coming second.  It's never going to be true, and I hope you will manage to come away from the experience of your childhood a more empathetic and compassionate person after facing the challenges that you will face.  Your sunny little smile always brightens the room even when things look grim.  Our family wasn't complete without you, and we will treasure you in your own right always.

Week 124: Reentry

2016 has gotten off to a grand start.  The IV's seem to have worked (knock on wood!!!), and Lemon's health has been excellent all week.  We had a wonderful time in Boston reconnecting with many of our oldest and dearest friends, most of whom were meeting Lime for the first time.  He was in his usual fabulous mood, and had a big smile for everyone he saw. 

Traveling with two little kids is no joke, especially when one of them has CF.  All the gear makes travel really cumbersome, and the treatment schedule constrains us and definitely eats into the time we'd otherwise be spending with friends or doing fun stuff.  It also seems like an inordinately large amount of work to essentially replicate our home set-up somewhere else.  We stayed in a hotel room suite, which was essential since we need a refrigerator for refrigerated medications and a stove for sterilizing our nebulizer cups. There may or may not have been an incident involving the stove and a dish towel. If there was such an incident, Papa Bear assures us that it involved smoke, but no actual open flames.  I wasn't there at the time, so all I can say with confidence is that the hotel staff insisted that we turn our ventilation system up to maximum and that they revoked our dish towel privileges for a few days.

Given that we got home at 10 last night and both kids were up before 5, I will keep things short  this week.  It is hard to believe that it has been two years since we moved to Madison.  We've come a long way since then, but Boston is still "home" to me in many ways.  Our house is in Madison and the kids' lives are based here, so in that sense, Madison is home.  But, when I walk through the old neighborhoods and visit all my friends, I can feel the illusion that it might be possible to slip back into my old life.  I know that life is history now, but I do want the kids to have a sense of belonging in New England--it is Lemon's birthplace after all.  One thing that I still find strange about Wisconsin is how rarely people who live here travel outside the state, and I don't want that to be our kids' experience, in spite of how difficult it is to travel with them.  So, we learned some good lessons on this trip, and with any luck we'll have the chance to apply them on another trip sometime soon.