A lot has happened since my last post. Ava has been inpatient twice in the last month for cyclic fever and hypoglycemia. She also had to fast for an echo (she’s been having tachycardia), which didn’t go well. She can’t fast with her blood sugar plummeting. Pedialyte doesn’t help, it doesn’t have enough sugar in it to maintain glucose levels. We checked into cardiology already low, so the cardiologist did the echo himself without sedation, and she was sent to the ED for critical labs and a glucose of 38. She has to be followed by the cardiomyopothy clinic.
Fast forward 2 weeks… She was discharged last night and will go back in on Tuesday for fluids and port placement on Wednesday. She can’t fast for surgery, so fluids are needed. She doesn’t have access anymore. It literally takes hours to get an iv in, and it’s very painful for her. They have to dig, try multiple places, etc… A port will help with this.