2.19.22 Steady

Still home. Still hanging in there. Thankful. 

After discussions with pharmacy last night and her pulmonologist this morning, it was determined that there is no enteral medication option for her to use given her gut situation. Until the inhaler is hopefully approved eventually, we would have to use IV antibiotics and would have to be inpatient to do so. We don’t want to be inpatient, so we are pulling out all of our tools and attempting to treat her without antibiotics for the infection. We are hoping that this time will be mild. The doctor heard all that we are doing and commented that we were performing ICU level care. At least we have found a way to do some of it here! 

At this point Aimee seems to be doing fairly well. We added another steriod inhaler, more nebulized saline treatments, continued oxygen, added more rounds of chest percussion therapy. Lots of cough assist. So far this is moving the secretions out and allowing her to fight off the infection herself. We hope. We are hopeful that it will be enough. If she does get worse, we will have to take her back to the hospital. 

Still, even during stress, even when we were doing cough assist 4 times an hour, it is still so worth having her here. Her siblings have been listening to audiobooks with her, playing animal sounds for her on the ipad, watching shows with her, singing to her, playing toys with her, holding her hand. What a season of simplicity and complication. Simple as we pare down to basics and essentials, to our highest priorities. Complicated in the intensity of care, the delicate balancing act. 

I have continued on a tiny bit with painting, though my subject matter has shifted slightly. Part of our homeschool lessons this week was drawing and watercolor art. Somehow that evolved into everyone painting Mario. 😆