Finn's Health Update

There are several CF families that keep blogs and I follow a handful of them.  There is one that just seems to rub me the wrong way, though, and I finally figured out why yesterday.  She ALWAYS talks about CF.  Every single post is about how negatively CF impacts their life.  Now, it's not an outright negative blog, in fact she seems to be a pretty positive person, but there is a subtleness to it.  For example, her son with CF turned 5 last month and they had a bug-themed party.  But insted of just blogging about his birthday and party she made sure to mention that dirt carries bacteria harmful to CFers and so because of his CF they only used plastic bugs and decorations.  Ummm.....you mean to tell me that if he didn't have CF you would have decorated your house with real bugs and dirt?  And those dirt and worms cups wouldn't have just been for dessert?  I'm not buying it.  Anyway, I share this because I hope that no one feels that way about our blog here.  CF impacts our life every single day, but we don't dwell on it.  We try our hardest to live life within our limits and without making them feel like limitations or disadvantages.  I hope that's how Finn feels, anyway, and I hope that's what you see.

That being said, it's been a while since I've updated and there have been some changes.  So, it's time for a health update.

On September 8th, Finn had his "annual" CF visit.  This is pretty much the same as all of his other quarterly CF clinic visits except that with the annual they add bloodwork and like to talk to you a little bit more.  I knew going into the visit that Finn's weight was going to be a topic of concern.  Our running deal with his doctor is that as long as his BMI stays above the 10th percentile, she won't talk to us about g-tubes (a surgical inserted feeding tube in the stomach).  So, let me show you the charts.

This is Finn's height for his age.  You will see that he is doing really well and has stayed on the 25% curve.  As long as he continues to follow this trend, this will put him at 5 feet 8 inches as adult.  That is just awesome!  This is what the doctor and dietician are looking for when they look at the charts, a nice steady curve.  

This is Finn's weight for age chart.  You will not see a pretty curve.  What you see are a series of plateaus.  He gains and then there is a plateau.  Then a jump and, most recently, another plateau.  Becauase his height is following a curve, however, these plateaus will correlate with decreased BMI.  So, in other words, he gains weight and gets "plump-ish" and then he stretches out and gets taller and thinner.  Wash, rinse, repeat.  That's been his general growth pattern.  So, next I'll show you the effect on BMI.  

Here is Finn's not-so-pretty BMI chart.  Notice how there are clusters of plateaus and then a downward trend.  Then that huge jump (the highest X), was when we talked about a g-tube before (the lowest X was the measurement right before the highest X) and decided to add his appetite stimulant.  The stimulant worked well for a while, but notice the downwadr trend since that highest X?  We are now back down to where we were the lowest before.  

The best way I've seen the importance of weight and BMI described was on the blog that I mentioned earlier.  She says, "Nutritional status has a significant effect on pulmonary disease progression and survival in patients with cystic fibrosis.   In fact, young underweight patients have worst pulmonary function outcomes, likely because "accrual of lean body mass is the factor that is involved in the preservation of lung function."  The Cystic Fibrosis Foundation recommends that CF patients stay in the 50th percentile."  Finn's BMI at this clinic visit was 7%.

So, our clinic visit was once again filled with the discussion of a g-tube.  I still had many reservations at that visit.  My biggest one was that despite all of this, Finn is still my biggest child.  How can I wrap my head around making my biggest child "bigger"?  There was a lot of discussion with the two different doctors and the social worker about this very thing.  Our normal CF doctor says that as soon as we are ready for the tube to call her and she'll schedule it for us.  The other "new" CF doctor gave us a weight goal of 2 pounds and 3 months to see if we could meet it.  I was very skeptical that we would make the goal.

I have talked to Finn and Kai about what a g-tube would mean and how they would feel about it.  I have been surprised by Finn's reaction.  Just two weeks ago he brought it up out of the blue and told me that he would like a "tube".  He says he wants "to grow up" and that it's hard for him to eat enough food.  Kai has concerns about the machine going at night and possibly waking him up.  I admit that I have the same concern.  But as I have processed and thought about this so much over the last 6 weeks or so I have come to a feeling of peace about it.  I don't want to put my child through the surgery (and there's still another piece of this puzzle I haven't mentioned that I am still wanting to fight) and I don't want to make him feel anymore different than he already does, but I want to give him the best chance I can.  I want to make sure he is as healthy as possible so that he has the resources to fight CF.  When the time for a g-tube comes, I have come to peace with that.  I don't know when it will be, but I'm sure it will come.  And that is ok.

Since the appointment, we have been pushing high calories on Finn.  And it seems Finn's GI issues are getting more aggravated.  I'm wondering if the high fat and calories are just too much for his body to handle.  He has thrown up at school twice now and also at home several times.  He has thrown up so hard at home the last two times that there has been a teeny amount of blood in what comes out.  He is getting more and more constipated, even on antibiotics.

Speaking of antibiotics, at the clinic visit he had a cold he was "recovering" from.  I suspected another sinus infection.  We put him on antibiotics at the visit.  He cleared up pretty quickly but within a week he relapsed again.  His cultures came back showing that he was growing Staph again.  I hoped things would clear up with sinus rinses and we finally got him doing that consistently every night now, but it didn't work.  He went back on antibiotics last week and had another visit with the ENT yesterday.  Interesting enough, his weight was up almost the entire 2 pounds that they wanted him to gain!  The ENT did see, though, secretions coming from his right maxillary sinus cavity and so he took some cultures from that area to see what we are dealing with.  I have money on Staph. His surgery in May showed that his right side was filled with polyps and Staph.  So, interesting that the right side is the same one giving him trouble agaoin.  The ENT told us to continue the antibiotics and add another sinus rinse in the morning (so now he is doing them morning and night) and to come back in two weeks.

I am so proud of Finn and how he is handling all of this.  If you've never done a sinus rinse, it's awful!  You shoot water up one side of your nose and tilt your head forward to make it come out the other side.  It's not fun.  And yet, he is doing them twice a day with hardly any compliant.  He hates the taste of the antibiotic and yet, he doesn't fight me on it.  In fact, he cried when it wasn't ready at the pharmacy because he said he knew he needed it.  He is a champion when it comes to doing what he needs to do to feel better and take care of himself and I'm proud of him for that.  He says that he wants to share about CF with his friends.  We will see how and when we will do that.  I've noticed that as he has gotten older that there has been the occasional comment from his peers.  I know at some point he will need to decide to educate them or not and it seems like right now he wants to do that.  I will do my best to let him lead in that aspect.  I love him and I'm proud of him (yep, I said it agin!)

Anyway, if you've made it this far you deserve a pat on the back.  I know this isn't the most coherent of updates, but it is what it is for now.  To those who support us on this journey, thank you.