Not as much fun as I'd hoped. I was so incredibly glad to have her back home, but the worries started piling up quickly.
We got home around 6, and by 1130 that night, she was running a fever of 99.5. Ok, so that's not REALLY considered a fever, but it's high for her. M's norm is about 97.5-98. By 130am, she was up to 101.5. Crap. Well, I think I was using more colorful language, but I am trying to cut back on that. And her O2 needs were up again. AND we didn't have any Tylenol. Frickin' recall. Sponge baths kept her stable throughout the night, then I ran to the grocery store for generic tylenol before work. During the day, David took her to her eye appointment (all was ok. recheck in a year.) then off to the pedi. Chest x-ray and bloodwork ordered. Still gunky, still suggesting viral. Pedi wanted CPT (chest percussion therapy) at home with nebulizers. Would have been nice if someone showed me how to used these things once they were delivered at home. Thankfully the nurses knew what they were doing and were able to take care of it. Of course, she was needing 4-5 litres that night too.
Next two days, she was stable, per se. Still needing more O2 than I'd like, but not needing more and more. Then we get to Thursday night. I had talked with the pulmo that I liked that afternoon, and he wanted an aspirate. Aka testing the gunk out of her trach to make sure they knew what they were dealing with. I was hopeful because the nurse we had that night was really experienced with respiratory stuff. I knew things weren't good when she had to wake me at 1245. She had M up to 5L, and her SATs were still dipping into the 80s for long periods of time. Time to call pulmo again. He said everything we could do at home, we were doing. Time to head back in. So at 130 Friday AM, M, the nurse and I were on our way back to CHS.
And I was pissed. Why the he!! did they send her home like this in the first place? She never should have been discharged until she was back to her baseline. THIS is why I had questioned things before we left.