Sunday, March 6, 2011

Noise and Expensive Machines

I am honestly so grateful to be sitting here today rehashing this, because I truly believe that one day it will all be part of our past and we will have a wonderful story to tell.   In my last entry, I wrote about incorporating manual airway clearance therapy into our lives.  This time, I'm going to cover the rocky start we had with the introduction of breathing treatments into Brady's regimen.  One of the toughest things about parenting a child with CF is trying to make the right health care decisions.  There are varying schools of thought on the best way to approach this.  Some parents adopt a "deal with problems as they arise" approach.  This can, in some ways, allow the child to live a more normal life by minimizing the amount of treatment time in their early years.  Brock and I are more inclined to put in the treatment time now and try to prevent the deterioration of his lungs as much as we can.  When Brady was 6 months old, we decided to start him on an inhaled drug called Pulmozyme.  Pulmozyme breaks up the mucus in the lungs, allowing for better mobility.  There is no clinic trial data for Pulmozyme in infants, so it is "at your own risk."  After doing our research, we decided to speak to Brady's Dr.  He was open to the idea, but left it totally up to us.

I asked, "Dr. M...Please just be honest with me...what would you do if it were your child?"
"If it were my child...I would have started them on it just after birth," he responded.

That is one of the many things I love about Brady's CF specialist--he will cut to the chase if you ask him and he respects a parent's right to participate in the treatment plan.  Three days later, a respiratory therapist came to our home with all our new equipment.  I was shocked at how loud the compressor was when it was turned it on for the first time.  We decided to wait until later that night to try the first treatment.  Brady sat on my lap and I held a tiny mask over his mouth and nose while a thick mist of medicine spewed out.  The first treatment did not go well.  At all.  Brady screamed, kicked and cried the whole time.  I cried.  Hell, I'm pretty sure we all cried.  For the next two weeks we would attempt again and again to give him the treatments we had CHOSEN to start.  Sometimes he cried so hard he puked.  The first two weeks of breathing treatments were pure hell, but failure was not an option.  It honestly felt like I was torturing my baby...but my gut told me he needed this medicine to stay healthy.  Then one day, just like magic, he realized that it really isn't scary and stopped crying.  He finally figured out we would let him watch whatever he wanted on TV during that time ;)

Breathing treatments have been a breeze ever since.  Currently, Brady inhales two medicines each morning (albuterol and 7% saline) and three each evening (albuterol, 7% saline, and pulmozyme).  When Brady turned 2, he was big enough for his Vest.  The Vest is a $16K machine that consists of a special compressor connected to an inflatable vest with hoses.  The vest inflates and oscillates Brady's chest wall at a particular frequency to loosen the mucus in his lungs.  Basically, it shakes the crap out of him for 20 minutes after he finishes his breathing treatments.  Brady's Vest machine is covered in dinosaurs.
The idea is to first loosen it up with drugs, and then shake it out.  Brady spends about 90 minutes a day doing treatments and vest.  The Vest is awesome for us.  No more pounding on the baby--thank you!  The vest shakes him hard and sounds sort of like a helicopter.  My mom actually cried the first time she saw him wear it because she thought it looked too rough.  Brock and I still sit with Brady through treatments, even though he does almost everything by himself.  For me, it is a time to snuggle him, sip my morning coffee, and be so thankful that these medicines exist to keep him breathing.  I will, however, really enjoy taking a baseball bat to that loud compressor one day when Brady doesn't need it anymore.  Since Brady began treatments so young, it is the only thing he has ever known.  In fact, I'm sure that one of these days he is going to realize that not all kids have to do this.  I talk openly about CF with him, but there is only so much that a 3 yr. old can comprehend.  If he is able to take the new drug VX-770 by age 5, I wonder what he will even remember about the treatments.  In some ways I hope he forgets.  In other ways, I really hope he remembers...because it will make all of us appreciate our lives more everyday.

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