We drove over to the sleep study (almost 45 minutes away) and it was already bedtime when we left. I knew it was going to be darned hard to keep him awake with no help in the backseat. But I did it, sorta.
When we got there, it was the same room as the last time. And it was the same tech as last time. (She remembered us.) I have a dear friend named Stephanie who ironically has been helping me with all this and guess what the tech's name was ... Stephanie! Thought that a very good sign.
Got him all hooked up. At first he was cool with all the "stickers" all over. And he was even cool with the things in his hair. (Kaley has been putting barrettes in his hair, much to my dislike ... but tonight it paid off ... must thank her.) But he didn't like all the stuff on his face and at this point, he had a meltdown.
Got him to the room and the tech finished with the electrodes and off she went. We watched a DVD I brought. By the end of one, he said, "Off" and went to sleep. Pretty uneventful.
I settled in the very, very uncomfortable, LOUD chair next to him. I was shocked at how it didn't exactly lay down, how I got no pillows, how it creaked loudly every time I moved ... then realized, it wasn't MY sleep study so just get over it.
It wasn't long before I noticed he stopped breathing a few times. In our room, the only machine was one that read his respiratory rate and his ETCO2. RR was VERY high all night (except when he stopped breathing). I saw it as high as 51 (while sleeping) and low of 9. Most of the night it hovered around 44.
The ETCO2 was very low. And every time I looked at the ETCO2, it was very low. I have no idea if it ever spiked, but never while I was looking at it. The highest I caught was 37. The lowest I saw was 6. Most of the night it hovered around 20. I'd been focused so much on high co2 that I didn't research low. I'll do that today.
The middle of the night was uneventful from my perspective. He woke up a lot (like he does at home recently). He also is doing increased coughing spurts. He has NOOOO cough during the day.
hTe tech came in at 5:13 and said "the test is over." She started to take a few leads off then said, "I'll be right back." While she was gone, he started the strange retching thing ... but the test was already turned off. (Seriously?) When she came in, she saw what he was doing but the test was off as were some of the leads. I told her THIS IS WHAT HE DOES. And she didn't seem worried, saying she already had it. So maybe he did it in the middle of the night and I didn't wake up for it? Who knows. But I was very upset that it was SOOOOO close to being "caught" and then missed by like 3 minutes? (Hopefully that's not the case.) And the episode lasted long enough that by the time we got to the car (about 15 minutes later) it was still going.
The tech she seems genuinely interested in him. I told her that last time, the sleep study was "shockingly normal". When asking her what she COULD tell me about the night she said, "They won't be able to say that it was normal this time." She said they had some good data that they will be able to analyze and then determine what is the best course of action for him.
So it made me feel better that they saw "something" ... I just don't know what it was.
It was very clear to me that he works very, very hard all night long. In the day time, he has a normal respiratory rate and sounds "normal". He doesn't sweat. But at night, he is DRINCHED like he is doing a marathon all night long. He sounds like he's heavy breathing (like you'd do if you just ran really fast or very long). It is not right.
Have no clue how long it will be before we hear about the results but it could be as late as Monday or Tuesday! Can you believe that??!!??
Going to be a loooooong weekend.