Tomorrow we return to UCSF for Silas's sleep study. We hope he will pass with flying colors.
This test was scheduled back in August when Silas was having an especially hard time sleeping at night, as well as keeping his food down and gaining weight. One theory at the time was that he was not putting on weight because he was unable to get sufficient rest at night. Back when he was waking up six to eight times each night, there was some fear that his CO2 levels might be creeping up and waking him due to some form of central apnea. According to that theory, without adequate rest his body would have trouble adding pounds, especially while he was burning calories tossing and turning.
We're now fairly confident that is not the case, but we're moving ahead with the sleep study just to be sure. Silas is doing much better now since his GI doctors have helped him with his metabolism. He's gained a pound, and he now sleeps for 9 or 10 hours each night with only one or two interruptions--a huge improvement. He also now often naps once or twice a day (which he never did before), and his pulse-oxymeter rarely alarms at night any more.
Silas is clearly doing much better, but he is still underweight, so his doctors want to proceed with the study just in case. They will attach him to a bunch of monitors and watch him sleep through the night. There's no sedation involved. They'll start him off with room air and then add oxygen to the level we keep him on at night as soon as needed. Then they'll record the overnight results for the pediatric pulmonary team who we'll see the following morning. Before Silas can get his trach out (which will hopefully happen next spring), he will need to be able to sleep through the night without oxygen and without having any apneic episodes, so tomorrow's study will give us a good idea of how much farther he has to go.
We hope to be back Saturday afternoon and will post more then.
