So Waverly has been hanging on to this sickness since my last post. It's almost been two weeks now. Still lots of coughing, secretions, some sneezing, etc. Her fever only lasted a few days, and she hasn't had one since. The seizures are better too, although she's had some times of seeming just neurologically agitated. But we've seen a few smiles here and there too, so that's good! So, it's been almost two weeks now of lots of extra care, even for her. We've been very aggressive with breathing treatments every 3-4 hours including nebulizer with albuterol, saline, or pulmicort, vest treatments, and cough assist machine (a new machine). There's also lots of suctioning after all that, plus anytime she coughs or sneezes. She's not sleeping very well, so we've also been having to get up a good bit to suction her throughout the night, especially starting around 4a.m. after she's been laying down for a several hours through the night. We're often up with her for several hours from that time on (which often means up for the day for whoever is up with her). She's also been on oxygen pretty much 24/7 for these past 12 days, ranging anywhere from 1/2 liter to 3 liters. She also finished a course of antibiotics and is on a 5-day course of prednisone to try to help with the lung congestion too.
For about a week now she's been holding steady. She's not getting any better, but she's not getting any worse wither. So, we've just been keeping her at home, watching her closely, lots of care, and waiting for improvement. We took her today for a chest x-ray just to be safe, and they said it looked ok. So, there's the latest update. We're praying that she can kick this bug soon and be all the way better soon!
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