Breathing Easy

On Monday, Jake had an appointment with his pulmonolgist to review the results of his sleep study. I have to say, it was one of the best appointments that we've been to in a while!! We received good news that his sleep study actually revealed fairly good results! Yay! Yay!!!

He does have slight apnea (suspension of breathing) and abnormal hyponea (episodes of overly shallow breathing or an abnormally low respiratory rate) while he sleeps. In fact, Jake had 33 instances of hyponea the night of his study, however his oxygen saturation levels remain in the high 90's for the most part and his carbon dioxide level are within normal range. This basically means he's not being deprived of oxygen, which is what we feared. His muscle weakness has caused his throat muscles to relax more over time, which is why his air exchange is irregular -- it also explains his loud lumberjack snoring! The apnea/hyponea causes Jake to wake up quite a bit while he's sleeping, but at this time his doctor does not feel the need to start him on any oxygen since his oxygen saturation is so good. Again, YAYYYYYY!!

We discussed Jacob's difficulty with the altitude when traveling to Lake Tahoe and his doctor advised that we take precautions when traveling to higher altitudes. He recommended that we spend a night or two at a mid-point elevation before moving to higher elevations. The doctor also advised that we not take Jake on airplane rides since he would likely experience the same altitude sickness and it's too risky to be that far away from medical care when in flight.

We were planning to travel to Tennessee in August for the annual Niemann-Pick Disease Family Conference, but given Jake's current health we had already made the decision not to attend. I REALLY wanted to attend the conference to learn more about the disease and meet some of the other families, but we know it's just not feasible to travel with Jake that far (8+ hour travel time). Our Tahoe experience coupled with the doctor's recommendation not to fly with Jake only re-affirms that we made the right decision. For now, we are just so very thankful that Jacob is breathing well enough on his own!

Blurry, but I caught a half-smile on camera : )