As you remember, Beau has been on oxygen since his respiratory virus in March. During his most recent hospital stay, the medical staff did not have him on oxygen at all as he was only dropping in oxygen saturation as low as 90% and back up to mid 90's without needing stimulation. I consulted with our ENT after bringing him home and he said with Beau's pending sleep study we can just leave him off and wait for results to better decide his respiratory needs. Our Dr. told us he's about 99% sure he wants to remove Beau's tonsils and adenoids but wants to get confirmation before moving forward.
We have expected Beau to have some type of sleep apnea as when he falls asleep we can see him stop breathing for a few seconds and then take one large deep breathe to compensate. And of course he has slept with a pulse-ox monitor since we brought him home from the hospital at 3 months old and he will drop below 90% within moments of falling asleep if he's not on oxygen. When Beau was hospitalized as an infant, this was also expected with all his de-saturation episodes that would not occur nearly as often when he slept on his stomach as his tongue doesn't fall back in his throat. So...
On January 9, 2015 Beau and I headed to the hospital for an overnight stay so they could evaluate Beau's sleep patterns. They did not want us to let our child sleep all day which we knew was never going to happen so we just withheld him his late afternoon nap though I knew this would make for a crabby child come 7pm! We got up to the room and the nurse began placing all the probes and wires on Beau. He was rather fascinated with his new bracelet! He did great with the legs, back, and chest leads, good when they started glueing all 12-14 probes on his scalp but the tears entered the scene when she was placing them on his chin and cheeks. He then had to wear a mesh cap to keep all the probes in place. She had me put his jammies back on because it would better keep everything in place. Lastly, he wore two straps around his chest and a nasal cannula to monitor his breathing and snoring! Within three minutes of lights out - Beau was fast asleep. However, he was up WAY more than normal throughout the night, not crying but just restless and coughing. I guess I would be too if I was hooked up the way he was with all 20+ cords collected in a zipper sleeve, hanging behind my head! I heard an episode of him not breathing within the first ten minutes of his falling asleep and I was so thankful that it was monitored. It's the worst when your child is sick and you get to the doctor and they show no symptoms! Let's just say I didn't sleep much that night and when lights on came at 5:30 I was ready to go home to bed!
The nurse gave me baby wash and tells me I can clean off his head in the bathroom as his face, scalp, and neck are covered in clue and adhesive. So I attempt a head bath... I'm holding his 24 pounds in my left arm, trying to scrub his head with my right hand while he's trying to pull my glasses off my face! I can tell you I have NOT mastered the standing up, one handed scrub down over the hospital sink!! After a few minutes and a crying boy, I gave up and put his hat on his wet hair just so we could get home! The nurse also made me fill out a "customer satisfaction survey" where I had to guess how much sleep Beau actually got... I guessed 6-7 hours as I knew how much he'd been awake. I asked her how much and she "wasn't able to tell me" so I've been curious for 2 weeks!
Today we got the results from Dr. W at the CHKD Sleep Center where Beau had the study; and yes, it was confirmed that has obstructive sleep apnea. She gave me a run down of all the study showed. Of the monitored 515 minutes (8.6 hours) Beau slept 479.5 minutes (8 hours), awoke 20 times for a total of 33 minutes, and had 176 arousals where there was a change in the EEG (movements or coughing with increased heart rate) but they were able to collect some great data. He has what they call partial obstruction where air is still getting through but not the amount that does when he's awake. He has episodes of abnormally low breathing, which is termed Hypopnea (high-pop-knee-uh)... thought I'd help with the pronunciation there! He showed 175 episodes of Hypopnea during his sleep study but 14 of them had no flow of oxygen at all. Eek... scary! This was about 20 episodes an hour. She explained that he slept in the different stages for the correct percentages of time as a typical child but during REM (rapid eye movement) sleep, muscles typically relax the most and he would have 60 events of Hypopnea during that time. His average oxygen saturation was at 93% and dropped as low as 78%. A healthy person would have oxygen saturation close to 100%; this is the amount of oxygen in your blood. So less oxygen coming in is less oxygen to your body.
So going forward I asked her if she recommended Beau going back on oxygen for the time being and she said it can't hurt. It will not eliminate the obstructive apnea as that is a result of his large tonsils and adenoids but it will "fill his oxygen tank" so when he does drop, he won't drop as low. So now we will follow up with our home hospital ENT and hopefully schedule the surgery!
I'm thanking God for giving us the answers we need to move forward in Beau's medical care.
Come to me all who are weary and heavy-laden and I will give you rest. Matthew 11.28
