We left for downtown around 6:30 am, grabbed drive-thru breakfast and made it by 7:30 am for pulmonology. Lydia goes through two testing procedures every 6 months to measure how much air she can inhale and exhale. Her inhale is above the 80% threshold and that's great. Her exhale is all over the chart due to her not being able to perform the test well, she's still learning. All in all a good visit. We'll continue with a daily inhaled steroid and hope for a good year of minimal respiratory viruses. Can we go to back to Colorado yet? Remains to be seen, she should be okay and we have to go to find out. Maybe we'll try Denver first, then Breckenridge, then make it all the way up to Twin Lakes.
Same day, different appointment.
Dan and Lydia left for CMH KS around 6:15 pm and made it by 6:45 pm for a sleep study. Lydia has about one sleep study a year to test her obstructive sleep apnea and see if she still needs CPAP. This requires her to be all sorts of sticker'ed and wired up for testing. Before her airway surgery, Lydia had 50 episodes of apnea each hour - severe obstructive sleep apnea. Since the surgery and two years later, Lydia had 3 episodes of apnea each hour - mild obstructive sleep apnea. YAY! This means we can probably wean off of CPAP. We're going to make a plan for that and also keep it handy during cold & flu season and fall allergies. I'm so happy for her that she can get rid of this. I'm so proud of her for sleeping with a mask, head gear and tube for the last two years. I'm cautiously optimistic that we are over a hurdle.
Go Lydia. You are a special little girl and we love you! Keep up the good work. Grandma
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