Day 9...Out of Bed

Today has been one heck of a day. Kyara has been through so much! It all starts with an X-ray at 6:30 am, then rounds (when the doctors come in, discuss the plan for the day and poke at her some) at 7:30 am. Then, we had to get Kyara on a stretcher and downstairs to radiology for the swallow study at 9:00. With all of the tubes, wires, the ventilator, and monitor, it takes a while to get her ready!

I know, I know... what about the swallow study? What happened? Well, no leaks! That is great, but leaves me puzzled as to how her cardiac arrest happened. I suppose it is possible she could of HAD a leak and now it is healed. Either way, it doesn't matter anymore. The better news is that they were able to pass a feeding tube into her stomach! This will be a great help for a couple of reasons. Obviously, it will be beneficial for feeding (instead of using IV nutrition), but it will also act as a guide for future dilatations, so they will not have question as to whether they are in the stomach or not. I had some apprehension about the placement of the tube, but I was assured by the doctors and the radiologist that it is in the right place. I am a total "Nervous Nelly" now, but I think I have earned the right to be that way.

So, the feeding tube is in and I was thrilled. I left Kyara with Gunars and had a few errands I needed to run. I had forgotten my purse, so I ran back up to Kyara's room and neurology had been there. Kyara responded to the penlight flashed in her eyes. She blinked when it was shone in her eyes. She did this consistently when the neurologist tried her, so we are pretty sure she was really reacting and it was not just coincidence. I then had to admit to him that she did that last night and in my excitement about the feeding tube this morning, I had forgotten to tell him. Sorry! So I left and then around 1:30 Gunars text me. They are taking out her breathing tube! WHAT?! Really? Now?! I got back as soon as I could and when I walked in Kyara was "SITTING" IN GUNARS' LAP! No breathing tube and maintain her oxygen saturation levels without any supplemental oxygen! Wow! I was thrilled!! I say the word sitting, but take it in a loose sense. Think of a toddler who you are trying to put in a carseat and they are trying not to go. You know how they stiffen up? That was what Kyara looked like, but I was so excited to just have her out of bed!

Mr. Dan came in around 3:00 and stretched Kyara out. She was not so thrilled with Mr. Dan, and I love it. Kyara GROWLED at him! If you have ever seen Kyara mad, I mean really mad, you know, she growls. Oh my, I almost peed my pants! Mr. Dan decided to go down to his stock room and see if he could fit Kyara for a wheelchair. He came back with a cool chair that fits perfect. It hold her head, has chest straps to hold her up, leg straps for her thighs, and a strap for her shins. It also can lean back to help her hold her head in place. Very cool. So we got Kyara settled in her chair and she chilled for the next 3-4 hours sitting in her chair and out of bed!

Today has been a very eventful day. We are very encouraged by Kyara's progress, but I do want to make something clear. Although Kyara seems to be more aware of her surroundings, she is still in a big brain fog. She still is not responding to commands, she is still not tracking with her eyes. She is improving everyday, but we don't want to get ahead of ourselves. Kyara has a LONG way to go.

We also received a carepackage from Kyara's teachers, Mrs. Carlisle and Ms. Laurie from Willis Road Elementary. It was perfect. They sent pictures from school, smells from class, cd of music from class, book that Kyara liked, and a cassette tape that brought tears to our eyes. When we played it for Kyara and she heard her classmates, her eyes opened a bit wider. Thank you so much! It is PERFECT!!

I took pictures today, I will post them later. Take care and thank you again for all of your continued prayers, love and support.