Do we want to be proactive? Or reactive?
Honestly, why we choose to have Gavin get infant PFTs is as simple as that. We choose to be proactive.
Part of being proactive is trying to catch a potential problem with his health, before it ever happens. Whether it’s something as simple as doing a blood draw or a throat culture every three months…we are constantly trying to stay on the proactive side of the fight…doing our best to stay a step ahead of the game. Heck, the fact that all 50 states are required to test for Cystic Fibrosis through the newborn screening test gives parents today a huge step in the right direction.
Obviously, any fight against an incurable disease is not perfect. There is no possible way that we can prevent everything, to be proactive with every single detail, to be able to predict everything…but infant PFTs have already proven to be a significant benefit in our family’s (almost) two year fight against CF.
Well, besides the occasional cold, Gavin has never seemed winded, or “mucous-y.” To us, he always seemed to be in great health, his lung function seemed to stay consistent, there didn’t seem to be any difference in the sounds of his lungs through a stethoscope. He never once gave us any reason to believe that something was awry.
Yet, because of infant PFTs we learned that wasn’t the case. His first test resulted in a FEV 0.5 of 125% (a measurement of his lung function). His second test? Those results fell to 94%. Sure, being in the nineties is still above normal…but obviously something was going on. He was in need of more medications, more tweaking of his medical routine. Something had to change or those results may have kept falling.
We adjusted his meds, got a slightly better result for PFTs in round three, adjusted the meds a little more and WHAM! Today, we’re back up to 118%. Not quite where we were when he was six months old, but 118% is pretty darn amazing. And a huge increase from 94%.
But…what if we had never done the PFTs? What if we went to a clinic that didn’t even provide them as an option?
We would have had no clue that his lung function was decreasing until he either got sick, or something drastic happened.
Without those tests, we would have had to react…rather than getting the opportunity to be proactive.
Is it fun having to bring a sleep & food deprived child into the hospital…watching your child get sedated…and having them put them into a machine that performs a breathing test? Obviously not. But, the benefits of the testing far outweighs the minimal risks involved. And because of those tests, we were once again able to stay ahead of the game. We discovered the drop before he began to clearly show a change, before he got sick, before a possible hospitalization.
And as Gavin grows? We will know what his baseline is, it won’t be a guessing game. We aren’t waiting until he is old enough to blow long and hard enough into a machine…assuming that number to be his baseline. We are going to have years and years of numbers & data, allowing us to track the ups and downs his health will take. Teaching us what works…and what doesn’t work for his care. Infant PFTs are providing us incredible amounts of information helping us to stay proactive.
Do I like my son needing to do an hour of breathing treatments a day? Do I like having to hand my son a handful of pills before every meal? Do I like my son needing to go to clinic visits a minimum of once every three months? Do I like my son needing procedures such as infant PFTs every six months? Do I like him needing to be brought into the clinic around his birthday for a day long series of annual tests? Seriously, who would.
BUT, I have made peace with every single one of them.
We are blessed to live in an era where such amazing medical care is possible.
And knowing that one sleepless night and one long morning of testing a couple of times a year could result in years being added to my son’s life? That the data he provides will help other CF patients in the future? That it gives us a huge opportunity to remain proactive?
The choice for us as parents was obvious. There was no way we would turn away from having Gavin do the procedure. Infant PFTs are an amazing tool that provides a patient (…their parents…their CF team…the CF community…) with priceless information.
I will say, the tweaking of his medications was not the only reason for his high results. We are consistent with his vest treatments. We immediately add an extra treatment a day if he seems to be getting sick, and continue them until he’s back to square one. And just as importantly, he is treated just as any other “normal” child would be treated. He does everything any other “normal” kid would do. We don’t let having CF hold him back.
I cannot tell another parent what to do with their child, nor would I ever want to. But, if you are questioning having the infant PFTs performed on your child…wondering if it’s “worth it…” I personally find an immeasurable amount of comfort in having that data sitting in front of me. No longer wondering…or guessing…that he’s doing “OK.” That he’s “stable.” That he’ll be ok until he’s old enough to do the regular ole PFTs. A comfort in knowing that we, his parents, are doing everything we can to remain proactive.
And remember, we went ahead and had the tests performed with Gavin showing absolutely no visible changes in his health…don’t avoid them because everything seems to be ok.
So until the day that someone can prove to me that infant PFTs are not beneficial? We will keep on truckin’ along…attempting to remain proactive…attempting to stay one step ahead.