November 21, 2010

I came to the realization today that Emily measures time by number of days with Mommy, meaning my days off work. Wow, that really makes me feel like a heel! I hate leaving the kids anyway, but to hear her tell Ryan, "You need to get ready for school. This is the last day with Mommy, and that means you have school." Well, it's actually not my last day before going back to work, and the boys obviously don't have school on a Sunday. I have one more day off this week, but she was certain that she had counted right. Her whole plans for the day had revolved around this being "Mommy's last day" which to her meant my day with just her and Braylon.

Instead, Emily, Ryan, and I went downstairs before the others got up to make cinnamon rolls. Ryan and Emily took Daddy breakfast in bed, and the other boys got to enjoy theirs when they got up. Very sweet morning with my middle two kids. And very yummy cinnamon rolls too. Just what my diet was missing, right??? LOL.

We've all been passing a nasty bug around the last couple weeks. First was Ryan sick for 2 days, then Ashton for 2 days, then Ryan for 2 more. Then we had a couple good days and then Denny got a fever and sore throat for 2 days. Several days later, Braylon came down with a fever but no other symptom. He ran 103+ for 2 days, then got okay. I wasnt' so lucky. Wednesday at work, my throat started hurting. By Thursday night, I was running a fever and was barely strong enough to drive myself home. By Friday morning, I had nasty blisters in my throat, could barely breathe, and could do little more than sleep. Fast forward to Sunday....I'm finally awake! Throat still killing me, but I finally feel like I'm joining the real world.

Only one who hasn't gotten it yet is Emily. Well of course she went to bed early last night claiming she wasn't feeling well and then woke up this morning coughing her little head off. I hope this isn't a sign of what's to come! Keeping my fingers crossed! She can't afford another lung infection.

The pictures below are of Braylon and Ryan taken last night after Emily was in bed. Braylon won these little tops from the school fair a few days ago, and he stood on a kitchen chair for hours last night trying to spin them. He likes them so much, he even slept with them! So cute! And then the other picture is of Ryan and our cat Miss Oreo. Ryan and his cat are nearly inseparable, but this might just be taking devotion to a whole new level!

Results

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!