We are back from Silas's sleep study up at UCSF. Silas was a little trooper this weekend. The sleeping conditions were not ideal, but he gave the doctors his best effort at a good night sleep and had lots of leads monitoring everything imaginable, so we're hopeful they were able to get all of the data they needed.
First we met up with Grandpa in the afternoon and were able to spend some time with him in San Francisco before we had to check into the hospital. Once we got moved into our room and got Silas down to sleep, the sleep study techs attached several dozen probes to Silas's body and connected them to a computer. They stayed up all night next to him watching his monitor and filming him. They were looking for any instances of desatting (dropping below 90% oxygen saturation--normal is 100%) or central apnea (pausing in breathing, usually when in deep sleep).
Given all of the wires and hospital noise, it's a miracle Silas slept at all last night. The sleep study techs were right in the room with us separated by just a curtain and they had the squeakiest chairs imaginable and seemed to be fidgeting or typing all night. Silas has pretty sensitive hearing and often wakes up from the sound of squeaks, even if far away. Plus there were crying babies in the rooms on both sides of us and the usual hospital background noise. He woke up three times. Twice he went back to sleep after a bottle, but we couldn't hold him or do much more than prop up his head, which made burping him a little tricky.
They started him out breathing just room air. Typically we put him on an oxygen mask at night because his oxygen saturation tends to drop when he's asleep, setting off the alarm on his pulse-oxymeter. He's rarely ever slept as much as an hour without oxygen at night with us, so we didn't think he'd last long before they would turn on the oxygen. Surprisingly, he slept from around 8pm to 2am without any help from the oxygen tank. He even went into REM sleep during that period and kept his oxygen saturation in the high 90s all by himself and no apnea.
Unfortunately, we don't know exactly happened after 2am because we fell asleep. All we know is that he woke up and we fed him around 3am, and we learned in the morning that they turned on the oxygen around 2am because he was presenting signs of central apnea. We don't have the details yet because we have to wait for the pediatric pulmonary doctors to review the full results and call us next week, but the sleep study tech did tell us about his need for oxygen and that he had some pausing in his breathing in the early morning hours. We eagerly await the official results and hope Silas's doctors have some answers for us. We know he's been sleeping much better at home during the past month and his sleeping conditions in the hospital were not ideal, but we'll wait to hear from the doctors what the study found.
In the morning Silas was finally freed from all of his wires, but he still has sticky stuff on him (especially in his hair) even after a bath this morning.
"Freedom!"We'll post more here when we get word back from the doctors. Until then, here's the view today from UCSF.
We didn't manage to get any pictures from the air show this weekend, but Silas did get to see the Blue Angels buzz the hospital in formation yesterday as they rehearsed for today's big air show.UPDATE
This weekend (10/16) we got our official report from Silas's sleep study. The report is very detailed with the precise time Silas spent sleeping in various stages and the number and duration of his various episodes of apnea. The good news from all of the data is that Silas kept his oxygen saturation above 90% for 95.6% of the time he was on room air (without help from the oxygen tank) for 114 minutes and he spent 34.5% of that time in REM sleep. Once they put him on oxygen he slept for another 313 minutes during which he spent 31.2% in REM sleep. (He also slept well for a while before all the equipment was connected and recording began.) So the doctors are satisfied that he is getting sufficient REM sleep and that is not the cause of his failure to gain weight. While off oxygen he had 42 episodes of central apnea, but once on oxygen he had only 9 episodes, and his central apnea index (episodes/time) dropped from 22 to just 1.7. The ultimate interpretation was that Silas has "severe sleep apnea which is alleviated with oxygen therapy." In other words, for now we are just supposed to continue giving him oxygen at night. No other procedure or therapy is required, which is great news. We are thankful that his doctors have ruled out apnea as a source of his struggle to gain weight, and especially glad that they are not recommending any further surgeries or interventions.
In other news, Silas gained 14 ounces between Sept. 27 and Oct. 15 (nearly a pound in just over two weeks), so we're encouraged that he seems to have turned a corner on his weight-gain. He's still only 18 lbs. 12 oz (about the 5th percentile), but he's back on the charts for an 11-month-old, which makes us very happy.
