Tuesday, November 9, 2010


Emily had an appointment in Louisville yesterday to get her recent test results. All in all, a really good appointment!

HRCT scan showed the usual chronic changes but overall some improvement from the last one done a year ago. Sleep study didn't show much of anything which is also good...no obstruction, no CO2 retention, pretty good oxygen levels. And last but not least, Emily's PFT's were also up! So it really looks like things are continuing to improve, albeit very slowly. It's been 5 years now since we brought home our little tachypneic bundle of oxygen tubes and cords, and at that time, we had hoped she might be weaned off oxygen within 6 months. And here we are, 5 years later....

Her doctor stressed that he does not yet feel Emily is ready to wean the nighttime oxygen, even though everything else is improving. As we're the ones who live with Emily, I can honestly say this is a good thing as well. While I'd love if we could get rid of it once and for all, I don't want her weaned until she is absolutely ready. Emily still has the shortness of breath, and when she's been off oxygen too long, she still gets very breathless and tearful. And if anyone has doubts, I challenge you to spend 72 hours with Emily without oxygen! She does still need it despite what tests might show, and she will let you know in a very loud, ear-splitting kind of way! And combined with her history and the fact that she is actually improving now, it just doesn't make sense to rock the boat. We are continuing things as is for now. Advair inhaler 2puffs twice daily, Singulair 5 mg at bedtime, and 0.5 liters oxygen at bedtime or when she otherwise needs it. Compared to the huge list of very harsh drugs she was on as a younger child, we've come so far!!!

On a very bright note, I want to offer my hugest thanks to Emily's pulmonologist for actually hearing what we say! That is so huge, especially as we've had issues in the past with other doctors not hearing our concerns and refusing to see Emily as Emily, and instead only seeing the figures and numbers instead. Yesterday, Emily's doctor had another doctor following him, and that doctor did not relate to us very well. He kept asking the same questions over and over like he was reading them from a script, and he just couldn't fathom why Emily was still on oxygen and why we say she gets so short of breath when she looked so normal sitting there on the exam table. When Emily's doctor came in, he attempted to put into words Emily off oxygen versus Emily on oxygen. God love that man! He's never had to listen to her wailing at the top of her lungs for oxygen, and he's never seen her first hand puking in her bed and crying herself to sleep because her belly hurts so bad from essentially no stomach motility. He's never seen her lying on the ground crying at cheerleading because it is too hard to breathe and cheer at the same time when it is hot outside! He's never seen her try so hard to do things other kids do with ease, just to have some sort of normalcy. He has never lived with the real life Emily, but still he can look past the numbers and the figures and the test results and see Emily for who she is, a kid who uses oxygen to help her make the most of her life. I think he really GETS IT, and I REALLY appreciate that!

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