Wow! It has been awhile since I have been able to sit down and write a blog post. It has been a hectic past couple of months, and even know as I begin to breathe easier going back into our old routine I know that it's only a matter of time before things get shaken up again.
Caelyn has been doing fairly well this past winter. I was really nervous since this is our first respiratory season without the trach, but Caelyn has done surprisingly well. She had a few small upper respiratory infections over the winter, but nothing too serious.
In January, Caelyn finally had her first appointment with craniofacial clinic. Anyone who has been in this situation can tell you how overwhelming and scary this can be. This is one appointment where Caelyn met with about 10 of her specialists one at a time to get their recommendations. We were there for 3 hours. Boy, was she tired when we got done! This is where we first learned that her doctors were recommending mandibular distraction surgery (more on this later).
It was decided that Caelyn needed to have her tonsils and adenoids removed. No big deal....or so I had thought. Turns out that now that Caelyn does not have her trach to fall back on for a secure airway she has a hard time waking up from anesthesia and maintaining her airway. Caelyn has set to have her tonsils out on the morning of Feb. 3, 2012. We arrived at the hospital in the morning and got her all registered. Then we were off to wait in the surgical waiting room. I was so nervous for her. Finally they called us back and we got Caelyn weighed and into her hospital gown. Turns out, surgery was running behind. They didn't even take her back for surgery until 3 hours after her surgery was supposed to start! Poor thing, I'm sure she was tired, cranky, and hungry...as we all were. You couldn't tell though, she kept a smile on her face and occupied her time playing peek a boo with her blankie.
We waited for what seemed like forever when we were finally told that Caelyn was out of surgery and in the PICU and that we could go see her. They had to bring her out of surgery with an endotracheal tube (breathing tube down her throat) because she was unable to maintain her own airway due to all the swelling.
They had to keep her arms in restraints and keep her heavily sedated because Caelyn is a bit of a wild woman when she wakes up from anesthesia. She kicks and bucks and gets hysterical. They had her on a morphine and versed drip and had to give her an additional 5 doses of medication just to keep her from waking up and trying to pull the tube out. It was hard to watch her go through that.
The next day in the PICU, they tried to remove the breathing tube. Caelyn did really well without when she was relaxed or sleeping, but when she got upset her airway would clamp closed. They ended up having to put a tube down her nose just far enough to stint the airway open through the swelling so that she could breathe. They took her off her sedation medication so that she could wake up and breathe better, but they were unable to take the restrains off because she keep trying to pull the tube out of her nose.
Finally, the next they were able to take the tube out of her nose and Caelyn did beautifully. We were able to move up onto the regular hospital floor and ended up going home the next morning.
When we got home we continued to struggle. The first two weeks, Caelyn refused to swallow anything. She would not eat and she would not even swallow her saliva. It got to be really bad. She would just let it all drool out and she was choking on it multiple times a day. Recovery for Caelyn was long and rough, but thankfully now she is better and her eating and sleeping have both improved tremendously.
If your kiddos had to have their tonsils and/or adenoids removed what were your experiences with it? I want to hear your stories :)