Monday, September 28, 2015

Week 110: Falling is like this

On Wednesday, Lemon and I headed over to our clinic for his appointment.  I was glad that we had made the extra appointment, since his cough had gotten more frequent/productive since I first started hearing it.  One of the great advantages of my new job is its flexibility: I can chose which 40 hours each week I want to work, so I don't have to use time off to take care of what needs to be taken care of for our little family to operate. That said, I did have a noon call scheduled with my boss, but I was under the delusion that this would not be a problem since our appointment was at 10.  To my frustration, we were kept in the waiting room for over half an hour.  Not only is it really difficult to keep a 2-year-old entertained in a waiting room for that long, but it is a direct violation of CF Foundation guidelines: CF patients are never supposed to be in the waiting room at all, due to the risk of picking up an infection from other patients.  While I'm very happy with our clinic in general, this is one area where they consistently let us down and they will be hearing from me about it!

Once we finally made it in, Lemon got weighed, and we learned that he has not gained any weight at all in the last month.  This wasn't a huge surprise given how marginal his eating has been, and actually I was a little surprised that he'd managed just to break even.  But, he grew a bit taller so his BMI has dropped, which is really not the direction we want to be heading.  So, we had a really long conversation with the nutritionist about what we're offering him and when.  To make a long story short, we're doing all the right things, and it's up to Lemon to take us up on what we're offering him.  That's kind of the answer I expected although it's frustrating because of course his willingness to actually eat is the one parameter over which we have no control!

After the nutritionist, we saw the nurse practitioner.  She listened to Lemon's lungs and we talked about his latest symptoms.  She agreed that he definitely didn't seem "sick," as he has in the past when he's had a cough like this, but nonetheless, any increased cough in a CF kid is worrying.  We agreed that it wasn't quite time for oral antibiotics yet.  Instead, we made a plan to increase his vest treatments to 3 per day instead of the usual 2.  We also decided to double his Zyrtec dose, in case the increased cough was due to more allergies that weren't being covered by his regular dose.  We had a quick chat with the respiratory therapist and the clinical study coordinator, and then we were headed home and I was "only" 15 minutes late for my phone call.

We implemented our new treatment plan beginning on Thursday.  90 minutes/day of vest treatment is a lot.  Good thing YouTube has a seemingly limitless quantity of toddler-appropriate videos. Amazingly, our treatment plan seems to have worked (knock on wood!!!).  The cough is basically gone, taking the runny nose with it.   Tomorrow we're going to go back down to two vest sessions/day so that Lemon has time to go to school, but I think we'll keep up the increased Zyrtec at least through the end of the week, and then see where we are.  This is the first time we've ever managed to achieve a reduction in cough without antibiotics, which is exciting.  Now if we could only achieve something resembling normal eating, we'd be getting somewhere!

Monday, September 21, 2015

Week 109: Onward ho!

Somehow all of us survived my first week back at work.  I enjoyed the work, and the team seems like a very good fit for me in a cultural sense--lots of Type A PhDs with young kids.  It's definitely nice to be able to hear my family through the floorboards (my office is in our basement), to know who's awake and asleep, who's happy and who's not.  And of course there's the greatest perk of all, being able to pop upstairs and feed the baby rather than pumping, which I loathe more than any other child-care task.  That, and being able to "commute" by strolling downstairs wearing sweatpants and a T-shirt is pretty awesome.  The cats are entirely delighted by my new work arrangements.

Lemon's eating has definitely been better this week.  Our strategy of waiting him out seems to have worked.  After conducting some of his own experiments, he reached the conclusion that not eating is associated with not feeling good, and he's been eating well again for the last few days.  Certainly he doesn't eat everything that's put in front of him, but he's eating enough so that I'm no longer worried about whether he's getting enough calories.  I think he may even have put back on some of the weight that he lost during his experimental period. 

All the same, we're headed in to the clinic for a checkup on Wednesday.  I'd scheduled it during the experimental period, when I was convinced that he was actually losing weight.  Now that he's eating again, that is less of a concern but we're going anyway because he's been coughing a bit for the last couple of weeks.  I wouldn't say that he has "a cough" per se, since he only coughs a couple of times a day.  But, on the other hand, it is definitely different than his usual baseline, which is no cough.  It's confusing because he really isn't sick.  He's full of vim and vigor, in constant motion and full of life.  So, we don't know what to make of the cough.  It could be some more seasonal allergies (we're having a lot of weed pollen right now), or it could be that switching over to the vest has loosened up some junk that was stuck in his lungs.  We need to get to the bottom of it, though, and if there's something that we should be treating differently, we definitely want to know!
So much for our lofty ambition of going three whole months without a clinic visit.  But, we want to be in absolutely top form as we head into winter, and right now we're not there.

Lime continues to be a delight, at all hours of the day and night.  He is chubby in a way that Lemon never was, with fat rolls in every place that one could conceivably have a fat roll and some places that I hadn't thought of before.  He's getting pretty good with his social smile, much better than I am at being fast enough with a camera to capture it.  It's true that everything goes so much faster with a second child.  One minute you're pregnant, and the next you're nearly done with the "fourth trimester."  I'm trying to relish each little stage as long as it lasts!

Monday, September 14, 2015

Week 108: Back to work

I don't usually write too much about myself on the blog, except to the extent that I intersect with Lemon and Lime, but I will grant myself the rare opportunity of taking center stage on a blog post since this week's most significant event was mine--I returned to work today after 10 weeks of maternity leave.  And, just to keep things interesting (because our lives are so inherently short of interest value), I began a new position rather than returning to my old one.

Here's the scoop--I had been dissatisfied with my former job for a while.  It was OK, my boss and coworkers were great, but it just didn't inspire me.  That turned out to be a bigger problem than I had originally thought.  I came to realize over the course of many months working there that in order for it to feel "worth it" to me to get up in the morning, rush around taking care of treatments and meals, and then spend the day away from Lemon, the job had to be something great.  And this one wasn't.  Once I was pregnant with Lime, I felt like the stakes were doubled--it would be twice as hard to actually get to work every morning, and twice as hard to be away from two kids all day.  Then, when Lemon was sick so many times this past winter, requiring extra treatments and attention, it was even harder to be away from the house.  But that left me with a conundrum--how on earth could I find a job that would let me be available to the kids as much as I wanted, while also being inspiring?

To address this question, I did the only rational thing--consulted the internet.  It quickly became clear to me as I read different types of job postings that what I should do next is pursue a job as a medical writer.  That kind of job would capitalize on my skills in biology and in writing, and many of those jobs allow for some opportunity to work from home.  One posting that I stumbled upon seemed to be a perfect match--100% work from home doing medical writing for a company called DaVita, which runs the largest network of dialysis clinics in the country.  Although I hadn't been planning on applying for anything right away, it seemed like too good an opportunity to pass up, so I threw my hat in the ring.  A bunch of interviews and negotiations later, here we are--my first day as a Senior Medical Writer, and my first day ever as a full-time employee of a for-profit company.  I'll give an update about what I am actually doing there on a day to day basis later on, once I've actually done it for a while and know what it is.  The overall gist is that I will work with internal and external customers to analyze DaVita's vast trove of patient data to find ways to improve care for patients with renal disease, and then write up publications describing the findings.  I'm excited to at long last be doing something that will directly and immediately help patients, and think that will be very motivational, especially when the going gets hard.

I am still a little puzzled as to how I will actually manage to do all the things that I want to do in a day--although my maternity leave felt a bit leisurely, I didn't exactly feel like I had gobs of extra time on my hands.  Maybe this will all seem more plausible once Lime decides to cut down on night-time feedings a bit.  But, I am very excited to try this out and I have the best possible support team in the world to enable me to do it. 

I'll step back into the background of the blog now, but I'll emerge from behind the daily routines of treatments, meals, diapers, and other goings on in a month or two to let you know how it's working out.

Monday, September 7, 2015

Week 107: To school

Our little Lemon is all grown up--he started preschool this week.  We're just doing two afternoons per week at the moment, to get him used to the concept.  At first we were worried that he wouldn't take to it, but from the moment we showed up at the school for his classroom orientation, he dove right in.

After the first full day of school, this was how he responded when I came to pick him up

I had to pry his little hands off the playground in order to get him home.

Of course we are concerned about germs from the other kids making him sick, and we worry about whether his teachers will give him his enzymes correctly before snack, but at this stage, when he's becoming so interested in other kids and clearly needs more than what we can give him at home, we feel like the risks are worth the benefits.  Ask me how I'm feeling about that balance come winter.  In any case, we wrote up a letter to his teachers and the parents of his classmates explaining his condition and asking for their support in keeping him as healthy as we can through the school year.  I put the text of the letter at the bottom of this week's post in case it may be of use to any of our fellow CF parents who follow the blog

The other highlight of this week was a wonderful visit from Uncle Jared and Auntie Lauren.  They had a blast with Lemon and Lime.  They gave Lemon a belated birthday present that he absolutely loved.

They wore him out every day that they were here, playing all sorts of fun games.

Don't worry, they got in some quality time with Lime as well.
It was a really wonderful three days and we look forward to seeing them again as soon as we can.  They are Lemon and Lime's only aunt and uncle, but they are the best aunt/uncle pair our boys could have hoped to have!

Dear Tera, Cherie, and fellow Room 3 parents,

We are looking forward to sharing a fun-filled school year with all of you.  As we begin this new adventure together, we wanted to make you aware of the fact that our son, Lemon, has a genetic disease called cystic fibrosis (CF).  This disease primarily affects the lungs and digestive system—aside from these issues, Lemon is a completely normal two year old.  Because this is a genetic disease, it is not contagious and poses absolutely no risk to your children.  However, it does cause some issues for Lemon that we would like all of you to be aware of, and we hope you will all become our partners in keeping Lemon as healthy as possible throughout the school year.

CF: The basics. 
People with cystic fibrosis produce mucus that is much thicker and sticker than normal.  This causes two major types of problems.  First, it blocks the ducts that connect the pancreas to the intestines.  That means that the digestive enzymes made by the pancreas can’t reach the intestine to digest food.  Second, the thick mucus in the lungs makes people with CF very susceptible to respiratory infections.  Because of these two types of problems, kids with CF used to survive for only a few years.  However, thanks to tremendous medical advances in the last few decades, people with CF now live into middle-age and beyond.  For more basic information on CF, please don’t hesitate to ask us or visit the Cystic Fibrosis Foundation at           

Lemon’s digestive issues
1.  Lemon needs to take supplemental pancreatic digestive enzymes every time he eats to help him digest his food.  The enzymes come packaged in tiny white beads, and will be given to him by Tera or Cherie in a spoonful of applesauce prior to snack. 
2.  Because Lemon has trouble digesting his food, he needs to eat a very high calorie diet in order to get enough nutrition to support his weight gain and development.  We will be providing him with whole milk or high-calorie shakes to drink at snack time instead of low fat milk, so that he can get the calories he needs to get through the school day.
3.  People with CF become dehydrated very easily.  Especially in hot weather, Lemon will need to drink a lot of water.  We will provide him with a water cup to drink out of.

Lemon’s lung issues
1. Lemon spends over an hour every day at home doing therapies to keep his lungs clear.  This includes medication that he has to breathe through a nebulizer, and treatments with a special vibrating vest that help to break up the mucus in his lungs.  These therapies help to prevent him from developing lung infections.
2.  Even with these treatments, Lemon is extremely susceptible to lung infections.  Even “normal” colds are very severe for him, often requiring antibiotics and possibly even hospitalization.  Because of this, the single most important thing you can do to help Lemon is to prevent the spread of germs in the classroom.  Please be sure to follow the school’s sickness policy—if at all possible, please err on the side of caution when making a determination about sending a child who might be sick or contagious to school.  Also, please support Tera and Cherie in their efforts to teach our children good hand hygiene.  We know that Lemon will get sick this winter and will probably have to miss a lot of school as a result, but anything we can do to minimize the number of times he is sick, and to give him time between illnesses to recover, will be extremely helpful to him. 
3.  People with CF are susceptible to lung infections that are not a risk for people with normal lungs, and they can pass these infections to each other.  Therefore, it is extremely important that unrelated people with CF are never in the same room together.  We are not aware of any other children with CF enrolled at the Meeting House this year.  However, if you become aware that another child with CF is enrolled, please let us know so that we can work with the other family to develop a plan to protect our children.

Lemon’s non-issues
Except for the things noted above, Lemon is an entirely normal two year old, and should be treated just like all of his new friends.  Because he is so young, he is not yet aware that he has CF.  We hope you will support our efforts to gradually build his knowledge about himself and the ways in which he is different from other children in a way that is honest, sensitive, and developmentally appropriate (“He has to take medicine with his food so that he doesn’t get a stomach ache.”).  

Thank you for partnering with us to care for Lemon.  Please don’t hesitate to reach out to us if we can answer any questions.  We look forward to getting to know you and your children, and hope that we all have a fun and healthy school year!