Luke had another sleep study in July that showed he had significant central sleep apnea. Central sleep apnea is usually found in people with neurological conditions, which Moebius Syndrome is and it doesn't really sound like it can be "cured" per say like obstructive sleep apnea can by just removing tonsils or adenoids or something. So this means Luke needs to be on the ventilator while sleeping for the foreseeable future. Disappointing to hear but it is the best for Luke. We did change his vent and oxygen settings, not better or worse just different. He is now on a breath rate of 20 with a pressure control of 20 (we have been at 10-12 here in the past). We didn't change the PEEP at 6 and the pressure support at 10. He is on less oxygen, 0.3L instead of 0.6L. Right now we are waiting for the results of a over night pulse ox download and a venus blood gas (to look at CO2 levels) and if they turn out good we will repeat the sleep study in 3-4 months and see if things are improving with age. The new vent settings are doing really good things for Luke right now as the volumes of air going in and out of his lungs has doubled, a very good thing. So I pray that Luke would grow out of this, if that is possible or God would heal him of it and he could get off the vent. My feeling right now is that we have the vent and thus trach right now to take care of the sleep apnea. I don't know all that much about central sleep apnea and all the ins and outs and what is really means for Luke but I am sure I am going to learn more over the next couple of months.
Many of our Pfeiffer kids have issues with central apnea. One of the first thing checked when this occurs is a chiari malformation. Avery did show some symptoms of central sleep apnea, but after her tethered spinal cord was corrected all was well. Thanks be to God! We continue to pray for Luke.
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