Last Wednesday Scarlett had her adenoids removed and PE tubes placed. She has had many infections these last several months and we are hoping this helps keep her off so many antibiotics. She was intubated for two months in the PICU so there was concern over how much stenosis she would have from this and how well she would tolerate anesthesia for her surgery. She did very well and as far as it could be seen she hardly has any stenosis which is quite remarkable. She also had several of my former co-workers taking care of her which was special and they did an excellent job.
Two days after her surgery she developed a fever and it continues today. Last night I brought her to the ER for the first time since she came home from the PICU. I’m pretty sure the ER doctor thinks I’m slightly nuts because I was demanding (very nicely) multiple tests to rule out infection. Of course with Scarlett’s history the ER doctor completed understood my concerns. I have to say Scarlett had very good care in our local ER. I really felt the provider listened to me. Scarlett is not the typical case. Her labs that measure inflammation were 4x higher than they were 5 days ago and her wbc is up. Which could be because she’s either having a flare, an infection is brewing, or stress from her surgery.
At this point I highly suspect a lupus flare. Usually her flares last 2 days and she’s better, but this flare is going on 4+days. But it’s still important to rule out any possible infections. Scarlett definitely keeps us on our toes. It’s hard to relax when she’s having a flare especially with her history of pulmonary hemorrhage. I have all the tools to monitor her vital signs at home. Her O2 sats have been good. She seems to be getting a little better. She finally does not have a fever tonight and she is in better spirits. Her lupus is definitely not keeping her from being a kid.
Scarlett knows she has lupus and in her own words tonight she said “my lupus is not keeping me from getting big.” That’s right my sweet girl. Keep the positive attitude and hopefully your flares get fewer. Scarlett’s lupus is definitely not keeping her down.