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Tuesday, July 31, 2012

Whew....It's been awhile.

Wow! It has been awhile since I've been able to post on here! After Caelyn's surgery in March we went through quite a long set-back period. She wouldn't eat or drink anything....she wouldn't even swallow her own saliva! She was choking all the time, she wasn't able to sleep hardly at all. It was terrible! Boy,  am I glad that we stuck it out! It took about 3 long weeks for all the swelling to go down and once she was back to "normal" everything was SO much better for her!! She was eating a million times better (she still has an aversion to drinking that we are constantly working on), sleeping better and most importantly, she was breathing better.

We started to notice that she had more energy during the day because she wasn't working so hard to breathe. That's when the trouble started!! I think it would be safe to say that Caelyn has definitely reached her terrible twos. It is amazing to watch her grow and learn everyday and see that even though she doesn't have the skills of a "normal" two year she sure does act like one! She has a very spunky personality. She is growing more and more stubborn and obstinate every day, but she is so much fun I wouldn't trade it for the world!!

Her second birthday was so much fun! She was not interested in her presents at all. I had to open them all for her. When it came to birthday cake time, she also was not interested. I got her to eat a little bit of frosting, but she mostly squished it and rubbed it in her hair.

Caelyn's favorite thing to do now-a-days is go for a walk. She loves to go to the park and feed the ducks (mostly, I think because her nurses always stop and get her ice cream on the way home).

Sometimes she likes to go to the splash park and play in the water. However, as you can see in the picture, sometimes due to her sensory issues she hates it and screams bloody murder the entire time we're there!

And...since it's been awhile since you've seen any pictures of is one of her playing with the balls and toys with her OT at therapy

And here is one of Caelyn playing with the light box at therapy. It has a fish on it. The only two things that we have found so far that motivate Caelyn are fish and bubbles :)

And lastly, a fun little video of little miss punkin head. She was in her stander, laughing and playing her piano...until I got my phone out and tried to record her. Then her terrible twos came out and she mostly yelled at me, did some smirking, and at the end finally played a little bit of piano. Sorry its sideways. And yes, if you listen closely in the background you can hear Caelyn's baby sister born 4-27-12. But, thats a different post for a different time. Enjoy :)

Friday, March 2, 2012

Tonsils and Adenoids, Oh My!

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 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 :)