A baby's wonderment at their first glimpse of Christmas lights, a sobering doctor's visit, a family fun night, all of these thing happened to me today. Today has been an incredibly long day and it feels like all of these things and everything else that encompassed today was actually several days blended together. In fact I feel that this morning was so long ago that I had to force my mind to recall that today started with a PT visit bright and early.
But before the PT visit I was awoken by a tiny person crawling up through the bottom of my blanket on up until they reached my face. I opened my eyes to a blond, fuzzy head little boy smiling at me. "Xander, it's still dark out." It was too late he had caught that I was trying hard not to burst into laughter. He started giggling. "I know but I decided I wanted to catch the doughnut rush." "what doughnut rush?" "I want to beat all the big people to the doughnut store." "We can't get doughnuts." "Why not?" "Because Ronan has PT in an hour." "Oh ok what about muffins?"
I was stilling smiling over my whole Xander conversation as I did a quick run to make sure the house was put together. The PT arrived just as I had set up a perimeter of toys around Inara as she played contently on her tummy. The PT worked Ronan for an hour having him step from the couch to his red chair and back again. By the end of the hour Ronan was nodding off for his morning nap and this signaled his PT that it was time for her to depart. Fifteen minutes later I had Ronan bundled and in the car on our way to his sleep study follow-up.I knew it was bad because the doctor had called me last week to insist I get Ronan an ENT appointment pronto. I just wasn't prepared for how bad. Ronan was out cold as I sat facing the doctor who was scanning the sleep report she'd created about Ronan. In the little over eight hours he was actually sleeping he had around 77 episodes where he completely stopped breathing. This averaged out to around 9 episodes an hour. In other words around every 6-7 minutes his breathing stopped for 20 seconds or longer. Also for a period of 30 minutes his breathing dipped to 75%. For around half of the sleep study his oxygen level was below 88. This meant that the alarms he got on his pulse-ox weren't his toe slipping off the sensor or him moving too much. They were real.
She said some of why we never caught it with his pulse ox is because their equipment is more detailed and precise. Their equipment could measure the level of carbon dioxide Ronan is able to breathe out and his level was abnormal. He's not taking deep enough breaths. She thinks these findings tell what happened when he had his really bad blue episodes. She called them Apparent Life Threatening Events. She thinks that Ronan's oxygen dipped so low and his heart rate dropped and he completely stopped breathing and in those instances they were episodes he couldn't bring himself out of.Because of all the findings and ALTEs the doctor decided Ronan would have to be put on a CPAP machine. However 75% of children don't tolerate a CPAP machine and if this is the case with Ronan then he will be put on oxygen for night and nap time. She sent us upstairs to have him fitted for a machine and told me to call if he refused to tolerate the machine and she would prescribe his oxygen. Ronan gets breathing treatments multiple times a day and he wears glasses and hearing aides. He is used to things on his face. He was fine with the mask but as soon as the machine was turned on and the air started to flow he panicked. Tears flowed, he shook and his eyes went wide. I wanted to pick him up, leave and tell them to just prescribe the oxygen but instead I agreed we'd give it one more try at home in his own environment.
Over three hours had passed since Ronan and I had left for his appointment when we made it back home. I ate a quick bite of lunch, fed Ronan and then I had to head back out the door again. My awesome mother watched the kids during naptime so Isaac and I could run our errands. First stop was the orthopedics store to pick up more breathable socks and order Ronan a new pair of shoes. Next I stopped at the medical supply store to stock up on extra pulse-ox probes, then it was to Wal-mart for medical tape to hold the sensors, distilled water for the cpap machine, and a dinner that would be quick to fix. After all the stress and pressure of the day Isaac brightened it up. As he drove he turned down the volume on the radio. "Did you know I'm randomly struck with a thought about how much I love you? It just hits me out of nowhere 'Man I really love my wife.'." I could have melted right there into a pile of weepy mush.
We made home in time for me to discover that my wonderful mother had already made dinner for us. Then it was decided that we would take Xander and Jadzia to see Tangled in 3D. I'm glad we did too because it was funny and cute and just what I needed. We came home and my mother once again came through for me.
While we were gone she had put our Christmas tree together for us. I had been whining earlier that day about how close it was to Christmas and we still hadn't gotten our tree up. My mom flipped on the Christmas lights and Inara while in her jumparoo froze mid-jump and her eyes were wide with amazement. Inara realized the beauty of Christmas lights for the very first time. 
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