Tomorrow was to be Maaike's first sclerotherapy treatment. We had hoped to get things started sooner than later so that her subsequent treatments would not linger into RSV season, but a sight temperature and a sometimes howling cough will push us back another 3 weeks. While I am disappointed I am also relieved. The thought of her tongue and cheeks swelling exponentially has me on an anxious edge. It will come eventually, but that day is not tomorrow.
Tonight was a battle to keep her oxygen levels up. Thankfully they have yet to drop below the 80's, but even at just one percentage of deviation the alarm goes off. I sometimes get to feeling that her machines are yelling at me. We tried all the usual stuff: up her oxygen, suction, wake her, but all in vain of a restful nights sleep for all of us. Then came the kneeling and the pleading. "Please help her. Please help us. Make it so the alarm stops."
I read the entire manual of her pulse-ox trying to figure out how to reset the alarms to go off below 88% instead of 90. That would help a ton and at those levels there is really nothing I can do, but alas the machine is somehow locked.
Then some inspiration. A deep suction, down below her trach, and then elevate the head of her bed. And so far it is working. We have dropped from 5 to 10 alarms a minute to 5 alarms an hour. I'm still uncertain about our nights sleep, but I am at least feeling we will get something.
I do not think there will ever be words to express to Maaike in her later years of all we went through, all we felt, and all the sleep we didn't get in order to save her, but even so, even now, it is worth it.
The alarm is sounding. I must go...