We were sitting in triage. Bella is being measured for height and weight. She is silly, but knows exactly what to do and when. It's cute. It's sad. And in my mind's eye, overlayed, is Bella in her KidCart in a triage room being measured for height and weight. It's surprising what triggers a memory, something simple usually.
So today was pulmonology. She'll start a bunch of meds to help with allergies/asthma. The hope being to give us the most accurate information from the sleep study in November. No one doubts she is desating at night. I'm still worried about getting the test performed. Will Bella cooperate? She didn't in August. We now attend a special therapy once a week just on medical trauma, hoping to lessen some of that fight/flight response to medical equipment and personnel.
Doctor noticed clubbing of her fingers. Why hasn't anyone called it that before? (Yes, I am a little annoyed here.) We went through a whole series of testing for Juvenile RA because of her fingers and toes. And now, one year later, those same fingers and toes are showing one of the evidences of her chronic hypoxia. I'm so afraid. All of this compensating she has been doing for all of these years, what is it doing to her body? And when is her body going to decide to scream for some relief? And will she survive that? So I am working with ENT, Sleep Specialists, and Pulmology, and the medical trauma therapist to get to the bottom of this. Everyone keeps mentioning her heart, so I may have to rope in Cardiology as well.
ENT doesn't think she'll tolerate bi-pap if she needs that. She mentioned she was afraid we'd have to go to the trach. Pulm says she's right, if she doesn't tolerate the bi-pap, it's a trach. But let's not jump the gun. I really, really, really don't want to go back there. At all.
To keep it real, here is how we deal with it - we put on a brave face and we smile :)
Dr. Bella, what she calls herself while we wait for doctors.