First of all, Lucy is okay.
Yesterday afternoon, I was giving Lucy a bath, and she was having a hard time controlling her secretions. I suctioned her, but I just couldn't get her clear. I snatched her out of the bathtub, and tried again to clear her with suction on her bathroom bench. She was moving air, but hitching, and I didn't have her pulse ox on since she was in the tub, so I grabbed her unceremoniously and ran down the hallway to her cough assist and pulse ox.
I had thrown her old g-tube extension away, and was going to put a fresh one on after her bath, so I hooked her up to her pulse ox and fished a new extension out. By the time her pulse ox was reading, it said her oxygen level was at 90. Not great, but not life-threatening on its own, and it was holding steady.
I got her extension hooked up, vented her, and coughed and suctioned her. Her numbers dipped a bit lower, but I kept working until she was cleared and her numbers were better, then dressed her and put her on bipap. She was worn out, and was quiet for the first 15 minutes or so of her bipap time, then perked up a little.
When I was relaying this to Noah, I told him that I wasn't sure if I should have taken the time to vent her, or proceeded to cough her without the vent. ("Venting" Lucy involves hooking up her gastronomy button to a tube, and opening the tube, to allow air to escape her stomach, avoiding pressure.) I felt I had done the right thing in venting her, since having too much pressure in her stomach while being coughed could lead to reflux or vomit. It had never happened in all of her 4.5 years since her g-tube/nissen surgery, but better safe than sorry, right?
Boy howdy, is that the truth.
Today I was doing Lucy's morning treatment, and we had just finished her second round of coughs. I unhooked her venting syringe and pushed her IV pole away, getting ready to put her up to drain. She started to hitch a little, so I paused, and thought, "Oh, one cough should be fine." Turned it on, and coughed her. We had coughed her without venting several times before we really knew better, and I assumed just one would be okay.
You know what they say about the word "assume."
The inhale comes first, and on that inhale, I heard a HUGE rush of air flood her stomach. I knew that wasn't good. After the exhale, I pulled the mask away - and out ran a dribble of yellow from her mouth. Her formula. The cough had pushed air in her stomach, and pulled her food up past her nissen, which is a surgery she had to prevent reflux and vomiting. It's never happened to Lucy before, but it's not impossible, and several SMA children vomit and/or reflux around the nissen.
The formula was running out of her mouth - and Lucy wasn't breathing. Her eyes widened. Her airway was completely cut off. I suctioned. No air passing. I coughed again. Air rushed in her stomach once more, her airway blocked, but no formula came out. Suctioned again. No air passing, and now her numbers are dropping. Lucy looked terrified, and I had to decide to keep working on her as is, or take the precious seconds to re-hook up her vent. I told her what I was doing, why I had to, and hooked up the vent, depressing her stomach, which let tons of air out. I still wasn't hearing any noise from Lucy, and her face was dusky. Numbers were in the low 80s for O2, and I don't even know what her heart rate was at. I coughed and suctioned until finally she started to pass air. She started to cry. Music to my ears, and a horrible sound all at the same time, because I can't imagine how terrifying it is for her.
I re-started her treatment, to try to clear out any stomach contents that she may have aspirated. Stomach acid is especially caustic, and could do serious damage to her lungs. Aspirating alone can be cause for atelectasis (lung collapse) or pneumonia. Her numbers were good, and though she was quiet (these instances are always very draining for her), she made it through the full treatment without panicking or having her oxygen drop.
I was shot. Toward the end of suctioning her - I think it was after I heard her make noise - my hands started to tingle. Like I had been sitting on them for hours, and they were finally getting the feeling back, except more intense. Buzzier. I don't know how to explain it. The same with my head - it started to buzz. My hands felt like they were shaking, but my mom said she didn't see them doing so. She had taken Bert out to go to the bathroom at the exact moment I gave Lucy the initial cough that started the episode, and came in just as I was starting to hear sounds from her.
I know that Lucy has it relatively easy, if you look at the spectrum of SMA. There are children who have more frequent episodes, or who crash harder. I am grateful, SO grateful, that we don't deal with more severe episodes, or deal with them on a regular basis, but that doesn't make them any less scary. Or draining, once they have passed.
I don't live life like my daughter is dying. To me, that's not an eventuality of her condition. It's not a given. But it is, like it is for all of us, a possibility. And while I was working on her, and seeing her numbers drop, I didn't know where - or if - they would stop dropping and go back up. I was doing everything in my power, and it's heartbreaking and terror inducing to think maybe this time it won't be enough. Those are just flashes of thoughts when you're in the moment, because you're focusing all of your attention on clearing your child's airway, but those flashes are there. Maybe it won't be enough. Maybe I'll suction when I should cough. God please, PLEASE guide my hands to do what they need to. Please clear her. Please.
Lucy isn't a "bounce back immediately" type of kid when it comes to these episodes. She's quiet and somber for awhile. But this afternoon, she's seeming pretty much back to her goofy, sassy, bossy self. Thank goodness.
I don't know if she has nightmares about these episodes. I know I would. My dreams are usually too abstract and bizarre to center directly on a specific event like this, but I'm sure some of the weird happenings are related to the extreme stress that I feel from them. I just pray that any episode Lucy has teaches us, and prevents the same thing from happening twice. It's an immense blessing any time we get another chance, and we never, never, take them for granted.
Needless to say, I'm very attached to Lucy right now. Noah is very attached to Lucy as well. This reflux is new territory for us, and something that, to me, means I need to just take an evaluation of any areas that Lucy may be changing, or weakening. We would very much appreciate your prayers for this being a one-time incident. It doesn't mean we won't still be extra careful from now on, but not having to watch Lucy go through that again would be a big blessing.
Hopefully our next update will be more upbeat! There are so many good things happening so quickly with Lucy's addition, so I don't see any way it couldn't be ;)