Saturday, April 2, 2011
Somara has been diagnosed with central sleep apnea. They originally did the first sleep study about 6 weeks ago. Typically when kids have sleep apnea it is obstructive not central. When a child has obstructive apnea they remove the tonsils and adenoids and the child gets better. Somara has central which means it is neurological. Her brain does not tell her to breath while she is sleeping. When they did her sleep study 6 weeks ago, she had 61 episodes in 8 hours where she stopped breathing for 6-15 secs. Her O2 level dropped at least 4% each time. I talked to her doctor and they say she has a bad enough case that they are going to put her on a bi pap machine. The machine will breath for her every 15 secs. They say the machine will help her a whole lot. So tonight we are having another sleep study to fit her for a mask and see how the machine does for her. We are still working with the insurance company to get her approved for iv ig infusions. Once she is approved for that, it will be once a month. They will admit her and give her imunoglobulin infusions. Each time it will take about eight hours. Praying this machine helps her get some much needed rest over the next several days, weeks, and months and praying the insurance approves the iv ig so we can get them started.