I promised myself I would not let my blog become overly negative, I know it's turned into a medical blog due to my youngest daughter's ongoing health problems. I like to think that I update good things too. But this isn't a happy post. I'm exhausted. Ava has been running a high fever (cyclic fever) that never stays down. I can look at the pulse ox and know if she's hot or not. Her heart rate will be under 120 if she's cool and over 180 if she's very hot. Her cyclic fevers are never under 105 degrees. They freak me out.
Last night was a night like we haven't had in months. A night similar to this one. Her heart rate alarms went off for being too low (under 80) and too high (over 220) when she was super hot. I have been rotating tylenol/motrin, but if I fall asleep and miss a dose exactly when it is due, her temp shoots up in minutes. At 2 am it was 105.4. The infectious diesease Dr says cyclic fevers are mostly benign. Um...Okay...
I wonder if they forgot to take into account her airway? Her typical nightime oxygen flowrate is 1 liter, which she does well with. Not last night. She desated to 72. She actually turned blue for the first time in a while. I caught myself wanting to panic. Deep breaths.. I seem to have forgotten lately that my child did this daily a year ago. This was a way of life for Ava not so long ago. Amazing how quickly we forget the bad times, even when we promise not to. I calmed down, turned her flowrate up and we camped out together on the living room floor, not sleeping much. We watched some Dora and cat napped. Waking to alarms. She never sleeps well with her O2 above 1 liter because it's loud going through the cannula.
She's now sleeping off her restless night and preparing for another one. Raising a special needs child is not easy. It's actually exhausting. But I"m looking over at my pale, snoring toddler with a O2 sat of 86 % and know for certain that there is no place on earth I'd rather be. Now, if you'll excuse me I'm off to turn her oxygen up and take a nap!