Sorry for no update yesterday. I couldn't keep my eyes open long enough to post one last night, but yesterday was a good day. We spent most of the day hanging out just trying to keep Ellie comfortable and slightly sedated with Morphine while the breathing tube was in. The doctor's plan was to take her back to the OR after 4 pm to extubate her so we had to let her wake up and get a little aggitated as that got closer. It broke my heart watching her cry soundlessly with the breathing tube in. Her poor little face (and whole body for that matter) was so swollen and puffy I hardly recognized her.
They usually just extubate in the room but she was classified as a "critical airway" and the doctor wanted to be in the OR in case it didn't go well. In what was very unfortunate timing, a code blue was called shortly after they took her back and I didn't hear the location clearly but it sounded like it could have been in the OR. I started freaking out thinking it was her, but minutes later the nurse came back saying she had done great and was on her way back. Phew! That took a year or two off my life. When they rolled her back she was awake and breathing on her own.
She is on a little more oxygen than she normally is at home because of all the swelling, but the Dr feels confident that will improve quickly. A few hours later I was able to feed her for the first time since surgery and boy was I NERVOUS! I just couldn't wrap my mind around how she would be able to eat with her epiglottis stitched up (to the back of her tongue I found out) and not have everything run straight down her trachea. My heart was racing and I was shaking, but she did amazing! Actually better than before surgery! It was such a relief. Since then she has had two more feedings that have gone well with occasional dipping in her sats, but no major choking. She had one scary episode when we were giving her some tylenol this morning. I squirted a small amount in her cheek and she didn't actively swallow and she totally aspirated. Her sats dropped into the 30s and she turned gray, but with some rescue bagging she recovered quickly. We put the rest of her tylenol in a nipple and she swallowed it down great. Lesson learned, we can't put liquids in her mouth without a nipple so she knows she must actively swallow.
Her breathing is still pretty noisy due to the swelling, but it is obvious she is no longer obstructing. I never thought I would say it is great to hear Ellie cry her little heart out. But she cried and cried and was able to breath through it without turning purple or her sats dropping. I am amazed at how peaceful and calm she has been. Before surgery she was just a restless and figety baby because she was always obstructing and trying to reposition herself.
I have been so impressed with Dr. Park and his team here at Primary's. We are so lucky to have one of the top Children's hospitals so close. I feel like Ellie couldn't be receiving better care. I am cautiously optimistic that she will continue to improve and this surgery is going to help her out quite a bit. The plan is to observe her through a few more feedings today and hopefully discharge home this afternoon. Thank you for all of your faith and prayers for little Ellie.
