2 Weeks and Counting

So, last night Kyara finally slept. I cradled her in my arms all night. Needless to say it was one of the sweetest nights of my life, but one of the most painful, too. She is HEAVY! And when she would get tense, I would try to curl her into a ball in my arms and hold her in a "flexed" position. Have I mentioned she is very STRONG? She broke through my hold some of the time. But, she DID sleep. She would sleep for a couple of hours then wake up for an hour, fall asleep for a couple of hours again, then wake up for an hour. While she was awake, the nurse would come in and "deep suction" her. She is very junky sounding (lots of mucus in the back of her throat which drops her oxygen saturation levels). To suction, they use a flexible straw and pass it through her nose and into her throat. It would bother the stew out of me, but she doesn't seem to mind. Unfortunately, because it is so dry her, Kyara's nose has begun to bleed from all of the suctioning. Today I bought her a humidifer for her bedside. Hopefully that will help.

I need to back up a day, and let you know that on Wednesday we had a lot of commotion. First, my dad went home, Kyara was moved...twice, and Luz Estela and Eriks (Gunars' parents) came to town to help out and see the girls. To make a long story short, my dad was great help and relief for us here. He stayed the night with Kyara so that we could sleep and he stayed with her while Gunars, Mom (Bunny), Skylar, Kassey, and I went bowling. It was fun, but I really wish they had a no smoking rule like they do back home. I am still trying to get the smoke out of my clothes! Oh, I ramble...back on track...

Kyara was moved from the PICU to the rehab floor. I wish I could say she was responding more and getting back to her normal self, but she is still in a major daze (for lack of a better word). She is not in a coma, but she is not giving us much in the way of communication or purposeful movements. Again, that is not to say she is not making any purposeful movements, but we wish she was doing ALOT more. She was given botox shot today and did not react to them. The Kyara we know would have been throwing a huge fit, screaming at the top of her lungs, just from the IDEA of a shot! So things are different. I am just waiting for something to click. I keep thinking that once one thing clicks for her, then other things will start falling in place. So, what is that one thing??? That is the million dollar question! Again, I ramble...sorry - lack of sleep will do that.

As I was saying, Kyara is now on the rehab floor. We got settled in a small room and then the charge nurse came in and asked if we wanted to move. "Well, no not really, but thanks." "It is a bigger room....I think you should check it out." So off I went to check out the new room. It is HUGE compared to the other one. So I repacked ALL of our stuff and off we went! The new floor is good, but now we have to do more of Kyara's care. We went from one-on-one care to six-on-one. Good news is that we get to have more rehab on the floor and that is exactly what Kyara needs.

Today Kyara has been through PT, OT and gotten the botox shots. We went for a little ride up to the 8th floor (family room area) for music and pizza. Kyara rode in the wheelchair we are using here and we dragged her IV pole and feeding pump behind her. It was nice to have everyone together for dinner. I wish Kyara could have been an active participant.

I know today's blog is a bit crazy. I am just writing as things come in my head and I'm sorry if I jumped from thing to thing. Hopefully it makes some sense. Kyara will have more physical therapy and occupational therapy tomorrow and I am ready to get back to her. I feel like I am missing so much when I am not there with her. But tonight, I am tired and going to bed. Good night, thank you for the prayers and thoughts. We are managing, but the support has really helped us keep our spirits up.