Monday, January 27, 2014

Week 23: The golden shovel

It feels as though I did very little this week other than shovel snow, but if I push myself I can recall a few other scattered moments...

Last week, we'd heard our insurance had declined to cover Lemon's last two doses of Synagis, as we had sort of expected.  We'd appealed the decision, though, and were told that if we wanted to we could participate in the appeals board's discussion via conference call.  Our understanding was that we could listen to the board's conversation, and then when called upon we could add our two cents.  Papa Bear and I did some reading the night before the call to refresh our memories on the current research on Synagis and CF so that we would be ready. 

My phone rang at the expected time, and we were ready to listen to what the board had to say, and then speak our piece.  As you can imagine, we were very surprised when the woman organizing the call just said "Hello, do you have any comments for the appeals board as they consider their decision?"  Even though we were a little surprised, I think we managed to spit out some vaguely coherent sentences about continuity of care, and that the lack of clinical data on Synagis and CF is due to CF being a rare disease, not due to a lack of efficacy of Synagis in CF patients and so forth.  As soon as we were done, the woman thanked us and hung up.  We have no idea who (if anyone!) was even listening to what we had to say, or what they thought of our comments. 

The good news is that we got a call back a few days later saying that we were approved for the two additional doses that Lemon was scheduled to get this year.  Phew!  The insurance company said there's no guarantee that they'll approve Lemon for next year, but I just said what I honestly feel--we're taking one winter at a time.  I also found out that unlike in Boston, where Synagis was given in a quick visit at the pediatrician's office, here it's a 90-minute visit to the pulmonology department at the hospital.  I'll save the description of why that is for later this week, when I'll be trapped in an exam room with a bored baby for no reason other than general inefficiency...

On Saturday, we went on a little field trip downtown to the indoor winter farmer's market, which is extremely lively.  Even though it's the middle of winter, the market is still jam-packed with extremely tempting stuff, and I had to be strict with myself to only spend the amount of cash that I'd allocated.

After the farmer's market, we went to the public library to register for library cards.  It turns out that the main library has its own chocolate shop inside--what could be better?  If you're there, try the Parisian hot chocolate--it's very small but packs a wallop.

After finishing my interviewing process, I hired someone to watch Lemon when I go back to work starting next week.  I'm very confident in her abilities, and she actually started today so that we have a week where she and I are both here to help smooth out any kinks.  She's very calm and experienced so I have every reason to think that things will be fine, but of course I'm still nervous.  I have to keep reminding myself that I had no special training that enabled me to open enzyme pills or look at baby poop before Lemon was born, so there's no reason that she can't pick it up quickly.  I had to leave the house for a few minutes right after she arrived to drive Papa Bear to work, and Lemon was asleep so I was telling her what to do when he woke up, and at some point she said, "Don't worry.  It'll be fine.  You'll be back in 15 minutes."  And it was fine.  So later in the morning I went to Home Depot.  Don't tell me I don't know how to have a good time.

In other news, the cats have completely adapted to their new home--I think they've totally forgotten that they ever lived anywhere else.  I can hardly say the same for myself, but at least this place is starting to feel vaguely familiar, and a little bit less like some weird parallel universe.  It's certainly not home, but it's getting there.

Monday, January 20, 2014

Week 22: 5 months young

Thankfully, this week was a bit less exciting than last week, because honestly I think all of us have had enough excitement for a while and are eager to settle down into something resembling a routine in our new hometown.  To that end, I interviewed a bunch of candidates to watch Lemon when I go back to work starting February 3rd, and identified a few that were promising.  No one seemed particularly fazed by the idea of taking care of a baby with CF, and honestly I don't know whether to tell them that it will be easy or that it will be hard, since only time will tell us that.  And, most likely, it will be a mix of both.  This coming week, I have second interviews scheduled with two candidates to see how they do during a little more prolonged interaction with Lemon, hopefully including both a feeding and a nap, and then I'll pick a winner.  The new nanny and I will have a week together before I start work to hopefully make the transition as smooth as possible.

I've also continued to practice driving--I think I'm now approaching 100 miles in our new car (probably representing 50% of the total miles I've ever driven in my life).  This past week, my wanderings included a field trip to the neighboring town of Verona, where I went to the Sow's Ear, a combination coffee shop and yarn store.  It's pretty much as heavenly as it sounds.  I got some nice yarn for a special project, because I have so much free time for knitting right now.  Well, not exactly, but with the Super Bowl and the Olympics coming up, there is certainly an enhanced possibility of doing some knitting sometime soon.

Speaking of the Super Bowl, sadly Lemon's team did not come through for him on his 5 month birthday.  He nonetheless enjoyed his special outfit (courtesy of Uncle Jared) and will continue to use it to display Patriots pride in this Packer-heavy town.

As Lemon has rolled through the past few weeks, he's continued to make lots  of developmental strides.  In the category of "they grow up so fast," he's beginning to outgrow his floor gym, where he has spent so many happy hours of his little life.  We got a Jumparoo for him before we left Boston, and got that set up for him shortly after arriving in Wisconsin.  He just loves it, even though is legs are still just a smidge too short to hit the floor, even with the seat at the lowest setting.  Nonetheless, he prefers it to the gym now, since he wants to be upright like a real little person, not flat on his back like a baby!
 He's also begun displaying a lot of interest in solid food, so we asked at his CF clinic visit what the nutritionists recommended as first foods.  They recommended either avocado or "baby meats," so we went with avocado, which Lemon seems to like, at least on a trial basis.  We decided not to rock the boat by asking about the feasibility of raising a vegetarian CF baby until the next visit.  Since he'll be getting most of his nutrition from milk for the next few months anyhow, it doesn't really matter what foods we start him with--we just wonder whether we'll be able to get away without feeding him meat once he's bigger.
Lemon has also gotten much more interested in reaching out and grabbing things with his hands, particularly my face and hair.  He is also interested in anything that I bring towards his face, including the dropper from his bottle of vitamins, which can have interesting results.  
For those of you who are interested in a little extra reading, I highly recommend an article by Jerome Groopman in this week's New Yorker, about caring for children with chronic illnesses (link to the article here, let me know if you want to read it and don't have a subscription and I'll send you the PDF).  It discusses how to approach a new problem in medicine: since children with chronic illnesses are living longer and longer (which is wonderful news!), what is the best way to coordinate the myriad specialists that are involved in their care?  How should medical professionals help parents to figure out the best course of action for their child, in the face of so many different choices and no obvious right answers?  Of course, the program described in the article was developed at Boston Children's Hospital, where we used to go, so it made me doubly sad that we had to leave the wonderful clinic there.  Hopefully we can help the clinic in Madison establish some of these same practices, so that as Lemon gets older, he can benefit from the new ideas described in the article.  For now, we're just bracing for this week's battle--as we had expected, our new insurance company declined to cover Lemon's remaining two Synegis shots.  We have an appeal phone call on Wednesday morning where hopefully we'll be able to bring them around to our side--fingers crossed!  

Monday, January 13, 2014

Week 21: The same but different

We had our first visit at the Madison CF clinic this week.  In many ways, it's the same as the as the Boston clinic, but of course in some ways, it's different.  The first difference is that I drove us there in our new car, totally without incident I might add.  As I mentioned in a previous post, one big difference between the Boston and Madison clinics is that the Madison clinic actually has a waiting room, since they have many fewer CF patients than Boston and seem to be a bit less paranoid about patient-to-patient transmission of infections.  They do, however, request that all patients wear masks while waiting for their appointments.  Unfortunately, even the smallest masks are a bit too big for Lemon.

Lemon's appointment began in the patient intake room, where they measured his height and weight.  He continues to cruise along at the 25th percentile for weight, so all seems well there.  The awkward thing about the patient intake room, especially in winter, is that by the time Papa Bear and I had removed our outerwear and stripped Lemon down completely to be weighed, there were about 500 pieces of loose clothing scattered around the room, which we had to then gather up to move to the exam room.

One notable difference between the Madison exam rooms and the Boston ones is the decor.
Other than that, the appointment ran very much like one at the Boston clinic--at least we knew to expect to be in the room for two hours as a parade of new people came through.  We got visited by the doctor, the nurse, the nutritionists, the coordinator for the clinical study, the social worker, and on and on.  By the end of the appointment, Lemon was completely exhausted.  He had just managed to doze off in my arms when the nurse came back in and woke him up to do a throat culture--not exactly the most pleasant way to wake up.  Fortunately, that was the last thing we had to do so after that we bundled him up and put him in the car, where he promptly passed out and was blissfully unaware of being driven home by a novice at rush hour with "wintery mix" falling from the sky.

Another major difference between the Boston clinic and Madison is the approach to enzyme dosing.  Madison seems to pride itself on using the highest doses of enzymes in the country.  Honestly, I think it is a bit strange to pride yourself on being an outlier.  Unless there is very compelling evidence that it is good to give very high enzyme doses, is it really good to be the clinic giving the highest ones?  That is, if the highest doses are really the right thing, why aren't other clinics on the bandwagon already?  I do feel that our doctor in Boston was a bit too conservative with enzyme dosing, and Lemon would outgrow his prescribed dose in between visits.  But here I feel like I'm actually pushing back a little bit against the very high dosing.  While I do want the dose to be high enough that he won't outgrow it between appointments, I just don't see the benefit to giving him way more than he actually needs to digest his food and grow well.

The other interesting enzyme note is that we are going to have to switch brands of enzyme since our new insurance doesn't cover the old brand (Zenpep) unless you've tried the new brand (Creon) and it doesn't work for some reason.  I wish Zenpep were covered since we know it works well for us, but we found out today that we have to at least try Creon.  If it works for us, I suppose that's great, since it will mean a low co-pay and no need for repeated battles with the insurance company, but if it doesn't work, I will be really annoyed that we had to take Lemon off something that was working well just to prove a point with the insurance company.

Other than the ups and downs of our first visit to the new clinic, we've just been continuing to adapt to life in Madison.  We went to a grocery store about a mile from our house that had an extremely impressive produce selection (note the price on this unusual fruit in the lower left).

I also went out for my first run in our new neighborhood to try and develop some new running routes for myself.  It turns out that there is actually a hill in our neighborhood, which is encouraging.  In this view from the hilltop you can see the shopping complex that is about a mile from our new house, in the opposite direction from the grocery store.
It occurs to me that I don't have any pictures of the new house to post yet--maybe by next week it will be less of a disaster and I won't be embarrassed to post pictures of it on the internet!

Monday, January 6, 2014

Week 20: Into the polar vortex

What a week this has been.  On Monday, packers came to our apartment and packed up our home of the last 4.5 years.  It's the first place Papa Bear and I lived together, the only place our cats have ever lived (aside from their brief stint with the crazy cat rescue lady, but that's a separate story) and the place where Lemon first came home from the hospital when he was born.  On Tuesday, the movers came and loaded all of our worldly possessions onto a giant truck bound for Wisconsin.

After that, we decamped to Nona and Opa's house for a few days until our flight to Madison.  Throughout all of this, we were saying our final goodbyes to so many wonderful friends.  Thursday there was a huge snow storm, which added a surreal sense to the whole experience, not to mention making the logistics of getting around on our last few days in Boston a bit more difficult.  Opa had to drive us through the falling snow for one last visit to Lemon's pediatrician for his January Synegis shot--giving us about a month buffer to get stuff set up for him in our new home before the February dose comes due.

On Saturday morning, Opa drove us back to our old apartment one last time to collect the cats and a few other things that we'd left there.  The cats were so thoroughly traumatized by being left alone in an empty apartment that catching them and putting them in their carriers was surprisingly easy--it's funny how both for them and for me, as soon as the stuff and the people were out of the apartment, it immediately ceased to be "home" in any real sense.  It just felt like an empty apartment.  So, with everyone and everything packed up, it was finally time to fly.

This is where the real hero of this week's post, my friend and colleague Dave, makes his entrance.  There are many wonderful things about Dave, but three of them are that he is unbelievably, incredibly generous, that he owns a jet, and that he has a nice camera and enjoys using it.  Combine these things and you have the heart of this week's post--the illustrated story of our flight to Madison on Dave's plane.  Dave's plane lives at the Hanscom airport west of Boston, so we drove out there and loaded all our cargo and pets onto the plane (note the snazzy DNA double helix on the body of the plane!).

Once everything was loaded up, we were towed out onto the tarmac where we fueled up and took off. 

Some of us were decidedly more impressed by the experience than others. 

After a very quick, smooth flight, we touched down in Madison, our new home.  It is really impossible for us ever to thank Dave enough for flying us out to Madison--managing all our bags, two cats, and the baby on a commercial flight would have been an absolute nightmare, and instead of that we had the easiest, plushest flight experience possible.  Hopefully some day and in some small way we'll be able to do something equally memorable for Dave.

Once we were on the ground, we got everything off the plane and into a rental car, and Dave drove over to our new house.  There, we got the cats set up in the basement and left them to their own devices to recover from the trauma of the last few days.

Our stuff doesn't get here until later in the week, so we're camped out at a hotel downtown in the mean time, with all the joys of sharing a hotel room with an infant.  Luckily for us, Nona and Aunt Donna drove out here in Nona's car to meet us, so we've had their help and company during this transition.

 To finish off the week, we bought our first car.  As those of you who know me can appreciate, this was a big step, since I haven't actually driven a car in about 4 years, and have driven a total of maybe 200 miles in my entire life.  The combination of the move to Madison and Lemon's arrival made it pretty much essential to have a car, though, so we'd made all the arrangements while in Boston and then went over to the dealership to pick it up.  Interestingly, the air temperature in Madison was around -18F when we headed out to get it, due to a weather pattern called a polar vortex--or, perhaps, due to hell freezing over, it's not clear.

All in all, it still feels like we're on some very weird trip, not that we've moved.  I don't know when that will really sink in--maybe when our stuff finally arrives?  Next week will be another big one, as we get our new house set up, Papa Bear has his first real full week of work, I begin my search for someone to watch Lemon when I go back to work, and we have Lemon's first appointment at the CF clinic here.  Then maybe I'll hibernate until April.