A light at the end

It had been a whole week since Hannah's last desaturation. That week was blissful. She was doing so well that in the morning I debated about turning down her oxygen even further. I decided against it and I am so thankful I did. But this time aound it was so much harder. I don't know if it was because this one was worse clinically in some way or if in just a week's time I had gotten out of practice of dealing with my apnea kid.

 I would like to wander off topic for a moment and continue to express my unbridled hatred for her pulse oximeter. I keep waiting for someone to pop out of my closet and tell me that I've been on some form of a candid camera show. I stare at it for a few minutes. Perfect wave form. Great sats. I turn around - it beeps. I turn back around to face it. The alarm silences itself. I walk away and get to the doorway. It beeps again. Seriously? Where is the camera crew to apologize and show me my little footage from the show?! I digress, back to Hannah.
I was changing Hannah and noticed that she wasn't cooing or doing her normal adorable things I do when I change her. I took one look at her face and knew she was sliding down fast. Her lips turned blue and her tongue wasn't pink. (Insert any number of inappropriate words here. That way you will truly feel like you were in the moment with us.) I check her tubes and cannula while with my third hand (it only appears during times of crisis and panic) cranks up her oxygen to a full liter. I pick her up and start talking to her. Because, obviously she has full control over the situation and if I just ask her nicely she'll bring up her saturations for me. (I seriously wonder why anyone trusts me with kids in the first place.) Here is when I really want to throw this fancy monitor with all the bells and whistles out the window. I can't get a reading on her. Of course, this is the first question her doctor asks me-how low did she go? I resist the urge to yell, "I don't freaking know because the bloody machine wouldn't read". Instead I try to explain how an inanimate object wouldn't work even though I did the same thing I always have. Thankfully, her doctor understands how frustrating this monitor can be and doesn't call CPS. Hannah finally came around after a short time. I hate how time slows down when things like this happen. In reality, I know that her desaturation can be measured in seconds not minutes. But it feels like hours when it actually happens. Sigh. Wow, off topic again. Sorry about that. The hard part about this time is that it took her much longer to get really stable and happy again. She rode her full liter setting for a few hours. I was able to turn her back to a half a liter by bedtime and normal settings in the morning. But for awhile, she was barely maintaining at a liter. I have this terrible feeling that if we don't get into the sleep lab soon, we'll be doing an informal study at PVH as in inpatient.
I have been carrying around this one bad desaturation all of last week. I let it hang around like the odor my boots emit when I been working hogs. The way it wafts into the air even when it isn't pleasant or invited. Then the weekend came and we had some wonderful people come visit us. They have walked this road. They have worn the exact stinky boots that we are forced to wear now. They understand what turmoil we are in and what the constant stress and worry can do. And it was so reassuring. All I can come up with is that this past weekend was like a big, warm hug. (Corny I know, but it is the best I can do. I went to school to count cows afterall.) It energized us and gave us a new understanding of where we stand. And all of a sudden, I can see a light at the end of the road. It isn't big or bright. But baby, I see it and I am not letting go of it.