Monday, February 29, 2016

Week 132: Leap

I made a minor error in my posts from Weeks 130 and 131, which I would like to take this opportunity to correct.  I mistakenly referred to Lemon's latest malady as "Something Vicious," omitting its middle initial, T, as in "Truly."  We finished up our 12-day course of levofloxacin on Thursday, and Lemon was pretty much back at baseline, no cough or runny nose.  We were (extremely) cautiously optimistic.  We caught our breath on Friday, and good thing, because by Saturday it was clear that Something T. Vicious was still with us. 

I ended up calling for more levofloxacin on Sunday.  I had thought about waiting one more day, but two things swayed me.  First, Lemon seemed to be getting distinctly worse as the day wore on, and second, because if you call the clinic after hours or on weekends, you get to speak directly to a doctor within 10 minutes.  Compare that to the quality weekday experience, where you speak to a receptionist, then a nurse calls you back, invariably at an inconvenient time, then you tell the nurse what's up.  Then the nurse goes off and talks to a doctor, and then calls you back, inevitably at another inconvenient time, and reports to you what the doctor said.  I'll take option A, thanks.  In any case, in addition to being a better patient experience, calling on Sunday was definitely the right decision medically.  Lemon really needed those antibiotics, and even in spite of them he coughed all night last night.  His spirits seem bright enough today, though, and although his appetite has been basically nil, everything that we've put in has stayed in--far more than we can say for our first encounter with Something T. Vicious.

This latest illness has made the issue of the G tube much more pressing.  We continue to be locked into this vicious cycle of no weight gain/respiratory infection/no weight gain, and we need something to break the cycle.  After talking to several different members of Lemon's care team, it's clear that everyone is on the same page--we've got to get that tube in ASAP, and try to get some calories into Lemon so he has something to use to fight off infection.  Of course, it's a bit of a Catch 22, because he needs to be cleared of this infection, or at least at his respiratory baseline, in order to undergo the surgery.  We've decided that we need to take advantage of whatever window this round of levofloxacin gives us, and schedule the surgery either for just before the course ends, or failing that, right after it does end, which means sometime in the next week or two.  I'm hoping we'll get a date fixed in the next day or so, but this one "minor" procedure on one little patient takes coordination of about a dozen medical professionals.  Meanwhile, we'll do an experiment to find out how long one can sustain oneself on nothing but Ensure Clear and strawberries...

One incredibly powerful thing that I did this week was to have coffee with another CF mom from our community who has 3 year old fraternal twins, both with CF (talk about perspective!).  One of her twins sounds so much like Lemon, at least in terms of relationship with food.  That little girl got a G tube about 2 years ago, and although the adjustment to the tube feeds was a big challenge, they've seen a great payoff both in terms of weight gain and lung health.  So I felt very encouraged, to know that there is hope and it is possible to break out of the loop that we're in, and that the tube may get us there.  It's also amazing that this CF mom is a woman that I've met in person only twice before, and briefly at that. Yet, as soon as we sat down at our little table in Starbucks the connection was deep and immediate.  We're living versions of the same life, on opposite sides of the isthmus that divides Madison into East and West.  So, at our third meeting, it felt like we'd known each other forever--we laughed, we cried, we enjoyed Lime's sunny little smiles, and we shared our hope for a better future for our kids and for everyone who wakes up to face CF every day.  

Monday, February 22, 2016

Week 131: Not enough

I'm happy to report that the combination of lots of time in the vest plus oral antibiotics seem to be winning the battle with Something Vicious.  We'll find out about the war once we go off antibiotics at the end of this week.  Unfortunately, thanks in part to Something Vicious, Lemon has still not really gained any weight.  Since September.  The volume of the alarms that go off at each visit has been getting louder and louder, and reached a fever pitch this past Wednesday.  Here's where we are:

Our electronic medical records may be fancy, but they don't yet let you manually scale the axes to something useful.  Nonetheless, I think you can see the point.  The goal for all CF kids is to hit the 50th percentile for weight-for-length (the yellow line).  We've never done it, and at the moment we've slipped below the green 10th percentile line.  More troubling is that Lemon's height velocity may be slipping (data not shown), which would mean that he isn't taking in enough calories to keep up with the growing that he's supposed to be doing.  For the first time, our after-visit summary said, "Please consider G tube placement."

So that's what we're doing.  Considering it.  Considering it seriously enough that I took Lemon in on Friday for a consult with pediatric surgery.  The operation itself doesn't sound too bad, other than being an operation and involving general anesthesia and whatnot.  I'm much more concerned about all the things that follow--more equipment, more tubes, weird formula, unknown impacts on our already ridiculous schedule, even more complexities with living and traveling, a semi-permanent hole in my kid that is not suppose to be there, etc.  Of course, I have to weigh those concerns against the concern of continuing to be this skinny--too skinny to grow, to skinny to fight off the inevitable infections, too skinny to wear the pants portion of the pj's that he got for Christmas and loves.

But enough of that.  We will continue to consider until the middle of next month, when we have our follow-up at the clinic.  I'm fairly sure we'll end up scheduling the surgery for sometime in April, but we'll hold off on making a final decision while we do a little more homework.

In the mean time, Lime (who has also been fighting off a touch of Something Vicious these last few days) finally managed to cut his first tooth.  Of course I'm thrilled for him, but I'm also slightly heartbroken that this toothless grin that I could stare at all day will soon have teeth in it.  I recognize the cuteness of the two-toothed stage, of course, but the toothless stage is what really tugs at my heart strings.  And it's gone forever.  Sigh.  If its disappearance is accompanied by the arrival of sleeping for more than 2 hours at a time, I would accept that as consolation.

We also had a wonderful visit with Uncle Jared this week.  He got in lots of quality time with the nephews.

 And paid the consequences--following Opa's lead, he took advantage of a brief recuperation window.

He headed back home to New York on Saturday, much to Lemon's chagrin.
And so it goes--another fast week in our little lives.  We've had some mild weather the last few days that melted a bunch of the snow, revealing the barren wasteland that is our yard, which of course has me thinking about garden projects for the spring.  Topping the list are a swing set, a sour cherry tree, and a pineapple quince tree.  That and finding a way to keep the rabbits from eating my chili plants as soon as I put them in the ground...

Monday, February 15, 2016

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.

Monday, February 8, 2016

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.

Monday, February 1, 2016

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.