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The Air We Breathe

Posted Aug 27 2009 11:38pm
It occurred to me recently that there is one aspect of Austin's medical care that I haven't mentioned much: Chronic Lung Disease.

I avoid it because frankly, it is still so convoluted mysterious to me. One day Austin was fine and the next he needed Oxygen 24/7. There was no in between period. Every day since then has been a complete and utter frustration.

Peeking Back:

Austin had surgery on February 1, 2008 for his Tracheotomy. Then again, on February 8, 2008 for his feeding tube. Before and after the first surgery, aside from his Obstructive Apnea, he needed no assistance breathing, no Oxygen, no Ventilator, just room air. Perfect!

Then, a few days after his 2nd surgery, he started to gain weight rapidly. So I am thinking, 'Great, the feeding tube is working!' No. This was BAD! It turns out that fluid was building in his lungs, he had something called Atelectasis. From that day forward he has needed Oxygen.

At first, it was 24/7 and that was a huge drag! Finally, they agreed to release him from the hospital because it was likely to be long term and something that could be done at home. So on Valentine's Day 2008, we went home and we have not been able to ditch it since.

Luckily, Austin's Pulmonologist in TX was very understanding that Austin's life should be as uncluttered and normal as possible. He gave me the green light to wean him from the O2 during the day. With a Pulse Ox machine and portable tanks we made a smooth transition to O2 use only at night. He was only requiring 1/2L to 1L and all was well. Or so I thought.

We stayed this course for eight months. When we moved to California, in September 2008, it took another month to get a new Pulmo appointment. At the end of October, I was basically scolded TWICE for not having him on at least 2L of O2 every night. There was no grey area. He needed 2L minimum. Period! And I was notified that one prescription he had was NOT going to be renewed, as it could kill him. WTH? I am not going to mention WHICH medication it was, but this whole appointment disturbed me greatly. It happened 10 months ago and it STILL bothers me.

How could two different doctors have such a different opinion. I really miss our original Pulmo, he was no holds barred and straight forward. Yet, I never got remotely scolded by him. Who are these new people? Why do they think I am out to kill my son? (Ok, well maybe not quite that bad, but still. The Nerve.)

During that first appointment, the new Pulmo ordered a Sleep Study to be done. We had to wait eight LONG months to get an appointment, in Texas we only had to wait 4 weeks. UGH! Finally, April rolled around and we completed the Sleep Study. TEN WEEKS later I got the results, in Texas we had the results the next day.

{Can you tell I really liked our Texas doctors?? They were so awesome and worked great as a Team. I don't know if it was the doctors we were lucky enough to get or the medical community in general, but in Texas Austin was treated more as a "special" or rare case and things tended to move quickly for us. Here in CA, he is just another kid who can't hear, eat, breathe, etc. This new set of doctors seem to have "you've-seen-one-you've-seen-'em-all" syndrome. Further complicating matters is the entire medical/insurance system which drags everything out, from testing to results. And let's face it, no parent -- Special Needs or not, wants to be waiting 10 weeks to get results, especially if it is NOT good news! But, I digress.}


So yes, the news was NOT good. Can someone tell me why I was not alerted? Nope. It turns out that the results from the Sleep Study indicate that Austin actually needs 3L minimum at night while sleeping. Gee, thanks for the heads up guys!

I will go on record here to say, that I am not giving Austin 3L of O2 every night, that is ridiculous. How do I know? Because he gets 2L and keeps his O2 sats at 99-100 ALL NIGHT LONG. How do I know? Because he has a Pulse Oximeter taped to his toe to measure it. There is no way on Earth, unless he is ill, very ill, that he needs 3L of Oxygen every night. I told them so. I am sure they duly noted that in his chart, somewhere.

So it looks like I waited 10 weeks to get news that was in no way helpful or useful. To me. The doctors found it quite useful, in fact. Because of that Sleep Study, Austin will not be having any surgery to distract his jaw or remove his Trach any time soon. It all hinged on one night of sleep and for whatever reason, they think he blew it!

So to recap: while I had him on the "killer" med & lower O2, Austin only had one cold last June 2008. Since removing that medication and increasing his O2 every night, he has slowed his weight gain, been sick with bacterial pneumonia numerous times ( at least 4) and taken more courses of Antibiotics than I have had in my entire life.

Is it just me or is he getting sicker?

Austin now has to have 6 breathing treatments a day, when he is well. Not easy. When he is sick that quickly adds up to 10 breathing treatments a day. Oh Joy! So whether we are enjoying Elijah's First Birthday Party, sitting by the Pool at a Disney Resort Hotel or driving in the ever infamous LA traffic - Austin.Gets.His.Breathing.Treatments.

I don't know why the air we breathe is not good enough for Austin. No one knows why; and at this point it appears that no one is actively searching for an answer to that question. Except me. What does this mean? We wait. More Tests. We wait some more.

We have our next Pulmo appointment in 30 days, during which they will schedule another Sleep Study. I hope he knocks their socks off!

Thanks for peeking,

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