I have no idea

Last night Anya was admitted to the PICU again. She has been needing more oxygen (again), but this time I could not figure out a reason. Monday she had her last dose of steroids from the last hospitalization, and then Wensday she had immunizations. She was crabby that night and needed more oxygen. Thursday we had our regularly scheduled appointment with Dr. Najaf. She agreed that it was probably from stopping steroids on top of getting immunizations and it would pass in 24-48 hours. Friday night she was not tolerating her feeds; I called Dr. Najaf and asked if we could try steroids at home. We started a dose that night, gave her half pedialyte and half formula, and Anya slept like a rock. So Saturday AM, thinking we were in the clear, we set up her morning feed. She proceeded to throw a fit and desat and look really uncomfortable. We got her settled down and she slept; the next feed we tried 50/50 again. No dice. My cousin Laura (who has been a pediatric nurse for over 20 years) came over, and after a while it became obvious that Anya was not going to improve at home.
In the ER I tried to explain what was going on, but it really doesn't make sense. I always feel this obligation to interpret as best as I can what I see, like I would when calling a doctor at work, and I do a good job of it. This time there was no way to package what was going on. She had been breathing hard for over 48-72 hours at this point so I expressed my concern that she was going to run out of steam soon, and she has historically needed high flow. That got started after a big snafu, the short time she was off her nasal cannula she turned grey and looked terrible. It took her 15-20 minutes to look normal.
She was fitful on and off all night and finally at change of shift it became obvious she needed the next step: RAM cannula. She has been resting comfortably on it. Her steroid level came back normal, she does not need steroids. It really doesn't make sense that she would still be suffering from injections. During rounds all of her admissions were discussed, her growth chart was examined (to make sure she is growing appropriately, of course she is), and an infection, for what seems like the upteenth billionth time, was ruled out. Out of ideas pulmonary was consulted.
They don't have any immediate insight other than she may need C-pap or Bi-pap at home. My initial reaction is that it would not work. She never tolerated C-pap before and I can't imagine she would at home. The team is still going to discuss her case and talk to me later; I hope they will forgive me if I remain skeptical.
Even though she has been admitted so often, I am not convinced that it is some sinister change in status. I think she is going to be tempormental until she can get through this winter. I don't think it is going to be easily defined and cataloged.
I pray I am right and am not blinded by mother love and wishful thinking. They are bringing up the cardiac cath again and I am really not excited by it. Trying not to be frightened by it but not succeeding. I just don't feel like that is the answer. If they intubate my baby and she suffers any ill effects from it, only to have a normal or inconclusive result on a cath! I will lose my shit. I am as patient as I can be but am growing frustrated. Trying to let go and let God.
Thank you everyone for reading this rant, as it has not been checked over as I usually do. I have to get back to the PICU, but I needed to explode in words.