It's hard to write an update, but I'll try. Abby is pretty much the same. She gets worn out really easily, can't go outside in the heat, and her oxygen levels go down when she walks up the stairs. She is getting nebulizer treatments and is doing the cough assist 4x a day, she gets wound care 3x a day, sometimes needs bipap, and then medicines are on a different schedule, so I feel like I'm constantly doing something medical! We are also keeping lots of documentation of her various numbers and when she needs to go on bipap so that we can prove to the insurance company that she needs a more portable bipap with a battery (the one we have right now doesn't have a battery, so it isn't portable.) I've been in close contact with pulmonology and we have an appointment on Wednesday. Our pulmonologist doesn't want us taking Abby anywhere except doctors' appointments, so that is what we have done. She's pretty concerned about Abby's respirator...
Choosing joy and trusting God!