In a homeschooling house full of 7 kids & 3 guniea pigs....there is never a dull moment! A lot of people show genuine concern for us and want to know how we are doing, as the road we've left behind was not a pleasant one. So, here I am, to tell some of our stories...share some of our days...and open up a part of our world to you! Come join us on our journey so you won't miss the moments that take our breath away!

Friday, January 28, 2011

Eagle is breathing like never before and it takes my breath away!

I know I promised a different post next...but sometimes things come know, those moments that take my breath away, and today I had one of those moments! 

For once we went to a specialists office and left with incredible news!  Eagle went for a follow-up appointment with his Pulmonologist (Lung Specialist) today and even the doctor was amazed with Eagle's progress over the course of the last three months. 

Three months ago when we were in his office, my son's lung condition was so bad that he should have been hospitalized.  It was thought that he must have some other condition, syndrome or disease that was attacking his lungs and that he didn't have Asthma at all.  He was tested for Cystic Fibrosis, and considered to possibly have Lupus (both of which do run in my family). His Cystic Fibrosis test was negative (as we expected it to be, since I was genetically tested before undergoing infertility treatment and so we knew I was not a carrier of the disease) and Lupus is so difficult to test for, we decided not to do the test.  At their best functioning level the large branches in his lungs were only functioning at 18% and the small branches were only functioning at 44%.  His condition was literally life threatening, as just losing 10% of his lung function during an Asthma attack would have cost him his life!  His condition was also chronic and this was the way my son had lived his life for the past 6 1/2 years since he was 2 years old.

Today, his lung specialist looked at me with the biggest smile and he said "To say I am pleased is an understatement, I am beyond impressed".  Even he didn't think my son would ever have "normal" lung function.  At best he hoped to get him into a safe level of lung function, so that the slightest change in his breathing wouldn't be so life threatening for him.  Three months ago, he told me that my son wouldn't be able to play basketball this year because he didn't have enough lung function to make it down the court.  Today, he explained to me that my son's lungs are 15% bigger than a "normal" child's lungs because of the inflammation and that when he's breathing his best...he's probably breathing better than anyone on that basketball team!  Now both sets branches in his lungs are each functioning at 118% (that's 400% better than they were functioning at his last visit) and he now ranks in the top 10th percentile of "normal" lung function for kids his age.  Furthermore, he explained that there is not one medical study that supports the theory that allergy shots have any effect on an allergic reaction in the lungs.  Therefore, the choice of whether or not he will endure weekly allergy shots is entirely up to Eagle because getting allergy shots would have no direct impact on his well being, but would rather only make him more comfortable (less stuffy, less puffy).  The Pulmonologist does not want Eagle exposed to allergins that we know trigger a response in his lungs, as just one set back could be very costly for him!  Our own pets are not a concern as far as his lungs are concerned, as he would not have made this improvement if they triggered an asthmatic response, but he will still not be able to visit our friends who have cats as this is one of his biggest known asthma triggers. 

In three months, we will return for another check-up.  If he does not have a flare up within those three months, we will then attempt to lower his dosage of this miracle drug.  This new drug does come with it's many risks and our hope is that we will not have to keep him on this particular drug for a very lengthy amount of time.  The longer he goes without an episode or flare-up, the more the inflamation in his lungs will go away.  If he stays stabilized for a year and has no setbacks, it is possible that his condition will be very mild or better yet...gone.  We know it's a long shot and we know with his history anything can happen.  There is also a risk that his lungs will become immune to this drug and his condition could deteriorate very quickly.

Today, I feel such a relief and I am breathing easier myself.  I think of what we have gone through all of these years.  The times he had to be rushed to the hospital or to his asthma specialist's office because the hospital never seemed to think he was having an asthma attack.  I replay those most frightful the day he grabbed his throat as if he were choking right before he collapsed on the ground unable to breath, or the time his lips were gray and he was vomitting thick mucus....the number of times he had a mucus plug blocking his airway or most recently the sheer panic he would experience when he couldn't breath and the anxiety he has now developed because he thought he was dying during the last few attacks he had.  I remember the fear I had with each of those attacks and how hard I tried to always stay calm and reassure him that he was ok, even if I wondered if he could be nearing his last breath.  I think of the years and years of frustration and how I fought to get family members to believe he had anything wrong with him and to take his condition seriously.

Just as we do with everything else...we take one day at a time.  Today, that specialist saw a completely different child than he saw three months ago.  He saw a child who has been reborn...a child who has recently discovered what being able to breath is like...a child who is breathing like never before.....and this is definately a moment that takes my breath away!


  1. WOW! Go Eagle. that is ecellent news. coming from a fam of astmatics and with 3 of my 4 having it, i know how scary it is. i gave cpr to my mom as a child 2 times during her attacks, scary! i have cpr to my 3 week old(my oldest) my 6 yr old has uncontrolled asthma, cf came back neg. soo congrats! and i hope you have basketball in your near future.

  2. Wow Mari! I've never had to give him CPR, although, he has been very close, so I consider myself very lucky in that regard!

    Does your 6 year old see an asthma specialist or a pulmonary specialist? My son was treated for asthmatic symptoms by his pediatrician beginning at 4 months old and was not diagnosed with asthma until he was 2 at which time he was then followed by an allergy/asthma specialist whom I loved. However, his asthma was never controlled and actually got worse. We moved and then began seeing another allergy/asthma specialist who tried very hard to get his asthma under control, but by the time we were in his care my son's condition was deteriorating very quickly and this is when he began his anxiety and panic attacks and I then demanded a referral to a pulmonologist. I love his current allergist and I believe he was doing the best he knew how to do, but the difference between an asthma specialist and a pulmonologist is like night and day and while an asthma specialist is fine for a mild asthmatic I would never recommend one for a severe asthmatic. I do not especially like the medication that is helping my son, as it carries a "black box" label, the most severe safety warning from the FDA warning patients about the potential for asthma related death associated with use of this medication. It also has countless side effects, including lower immunity, stunted growth, etc. This medication is not even approved for children under the age of 12 (my son is 8) and it is always used as a LAST resort. For my son...we really didn't have a choice and this drug has proven to be a miracle drug for him but we hope to not have him on it for much longer!

    Do you guys use a peak flow meter?

    Don't accept anything less...find a different doctor who can get the asthma under control! It will only get worse and it is so much more dangerous if it is not controlled, these are the kids who lose their lives to asthma!

    Had my son been admitted into the hospital that first day we saw the Pulmonologist, he would have been listed in critical condition. He could have been just one asthma attack away from losing his life, as with just a decrease of 10% of his lung function (easily could happen with one of his asthma attacks) and he would not have been here today. Now, he can safely loose 30% of his lung function during an attack and still be ok! In his current condition, that is very unlikely to happen.