Today was the big day for Averi. We arrived at the hospital at 8:30 only to sit in the pre-op room until almost noon. They finally came to take her to the OR and then the real waiting began.
After quite some time the ENT doctor came out to inform me that the laryngoscope was done. Her laryngeal cleft repair looks really nice and has healed well. He asked how she was doing with eating and appeared frustrated that we were still having to thicken her liquids.
He explained that often someone with a laryngeal cleft experiences nerve damage that isn’t reversible, causing them to still have issues with swallowing even after it has been repaired. I asked if that would ever get better and he said that it might get better with age.
Knowing that we might have to thickener her food forever is slightly frustrating, but I think I’m more frustrated that I’m just now hearing about it. I have gotten to a point with Averi that I need to know what I’m up against so that I can be mentally prepared to fight back. At least we know that everything looks good and hopefully her eating will just continue to slowly improve.
The ENT then apologized for the wait, explaining that they had to stick Averi several times before getting the IV put in. I counted later and found at least 14 spots where they had tried and failed. It’s a good thing she’s already asleep for that or they would have a problem on their hands.
I then sat down and waited as the 10-15 minutes needed for the biopsy turned into 45. I got so freaked out that maybe her platelets were so low that she started bleeding out that I couldn’t sit still. Finally the doctors showed up, explained that everything went well, she didn’t bleed out, and they were taking the specimens to the lab.
Averi was then taken to recovery where her visit turned into a longer stay. When they finally let me go back to see her I was told that she sounded very croupy and barky and had already been given a breathing treatment. Both Anesthesia and ENT came back to double check her, debating if they were going to admit her or send her home.
At last the anesthesiologist turned to me, told me I didn’t look like a crazy mom, she trusted me to take care of Averi, and explained that she would be sleeping in my room tonight. I agreed and we were sent off to be discharged.
Of course the first thing we were told in discharge was that Averi had to drink some apple juice. I explained that it was kind of hard for her but the nurse insisted and went to get some thickener. After 15 minutes of forcing it in her mouth, the nurse returned to tell me she didn’t realize Averi had a G-Tube and we could have just given her some liquids with that.
She finally took out the IV and we were packing up when another nurse walked in and said she didn’t like that she could hear Averi breathing from out in the hallway. The anesthesiologist was called back again but she still okayed us to go home. I think if I had been more upset about it we could have stayed, but I was ready to go home.
Averi slept the whole way home and then slept some more when I cuddled her at home. Her breathing sounds pretty bad and is really wet and she has a bit of a fever so I’m a little nervous about tonight. She is out for the time being and hopefully we will have some answers by tomorrow.