Abby's primary doctor (oncologist) has brought in many specialists to evaluate Abby. The specialists have then in turn requested more specialists look at Abby. She is currently being followed by 8 pediatric specialists and has been seen by 4 other types of doctors (not including her pediatrician).
To say Abby is complicated is a gross understatement.
Friends often ask how Abby is doing but how do I honestly answer them when my daughter is being held together with spit, wire and duct tape.
Abby's oncologist is coordinating her treatment but we haven't been able to see her for months. She has been on hospital rotation when Abby has been home and in the clinic when Abby was in the hospital. Abby has seen other oncologists/PAs/nurses but not her primary doctor. They talk to her doctor and the she decides what to do. The other oncologists are great but they only know a small portion of Abby's medical history/status.
I am frustrated/worried/tired. Abby is hurting again. Her headaches are back because the medication to treat them was decreased. It made her CO2 dangerously low and we could have lost her. It needs to be increased to prevent brain damage but it needs to be managed much better this time.
Abby's breathing is still horrible. The CO2 problem causes slow breathing, her airway is weak because of damage from the chemo and she has asthma. No official asthma diagnosis yet but 3 doctors (who are treating different parts of her anatomy) suspect she has it and I have seen many signs that support their opinion.
I don't think we can safely care for Abby at home without medication and medical equipment to help her breathe but I can't get them without a doctor's order. Abby has an appointment with one of our favorite oncology PAs today. I am praying I will be able to express my concerns clearly and that she will be able to help Abby.
We need your prayers more than ever.