So guess what happened last night...a repeat of Friday night. Averi came home yesterday acting completely normal and breathing just fine. We even went for a family walk and enjoyed the almost spring weather. Once we put her to bed, however, it was all down hill and no open window, humidifier, or upright position could stop her ribs from retracting.
She was already scheduled for a clinic appointment early this morning to have her blood counts checked so I figured I wouldn't worry too much since she could get another breathing treatment while we were there. Silly me.
When we arrived I told the receptionist that we needed to see a doctor. She told me to let the lady know that takes vitals. So we sat and waited to be called back, and then waited some more while Averi continued to sound like Darth Vader.
A nurse walked by, heard Averi, and immediately took action. She sent us straight to the back where they set up an aerosol breathing treatment and called for the doctor. He came back and informed me that she needed an epi breathing treatment (duh), which they don't have, and sent us to...the ED.
So we spent yet another day hanging out in the ED, and did I mention that Kaili was with us since I thought it was going to be a quick clinic visit? She was given another dose of steroid but no epi because by then she had worn herself out and fallen asleep sitting upright on my shoulder, which calmed her breathing.
The ED doctor explained that he thought there might be something obstructing her breathing, since she wasn't getting any better and she's had a previous throat surgery, and sent for ENT. ENT decided to do a bedside scope which involved me holding Averi against my chest while he shoved a long tube down her throat. This greatly improved her attitude.
He didn't see anything wrong but explained that this scope only goes down to the top of her voice box. Apparently when she was last scoped in October to make sure that her laryngeal cleft repair had healed correctly, they had noted some narrowing of the tubes just below her voice box. He was concerned that this narrowing had swollen shut, preventing any air to pass through, and that it might need to be expanded back open. So we packed up and headed to the OR.
In the OR, they were able to scope all the way down to her lungs and thankfully didn't find any obstructions but did see a lot of swelling and inflammation. They suggested that she be placed on a high dose of steroid for 24 hours and she was admitted to the floor on oxygen.
I have to admit, it wasn't the day I had envisioned when I packed a few toys and no food for my four year old. Thankfully, I think they are taking us more seriously and we will be here a couple nights before they try to send us home again with a baby who can't breathe.