Visitors!!

Well it has taken me several hours to get this blog updated. I keep starting and then getting interrupted :) At one point I was ready to hit "publish" and then half of my post dissappeared!

It has been a long day. But as I look over at Kayli and see her texting friends and smiling and watching t.v.- I realise she is a little happier this evening than she has been in the past couple of days, and her spirits have been lifted a little.

FRIENDS

Kayli has had lots of visitors today. First to come by was Celey, her Geometry teacher. (Obviously she is more than just a Geometry teacher to our family lol) Knowing Kayli was in great hands, Mark & I took the opportunity to run home and shower, care for the animals, and pick up my car to bring to the hospital. While we were gone The Hamilton's, Rob, Dawn & their children came by. Rob is one of Kayli's softball coaches and his daughter Alicia is on Kayli's team.
Kayli's friend Austin and his mom Donna came by, then Uncle Robert & Aunt Claudia. Lisa & Sarah Anderson, and the Manuel family. I think all the visitors did wonders for Kayli. She's tired tonight, but feels cared for.



LATEST

Several different developments today. They moved her to the IMU (not the ICU as I previously thought). IMU stands for Intermediate Care Unit. It is right next door to the ICU- she is being monitored more closely and this way she is close to the ICU if needed. This is a step up from the care she was receiving last night. The dr has ordered a PICC line. They were debating between a PICC line and a central line, but the PICC line is what they got consent for...however that was around 4pm, and neither have been done as of yet. Because of all the difficulty the nursing staff is having drawing labs over and over and giving meds, they want to put in this line to give them easier access. This is a bit of a scary ordeal.
Another development is that her white blood cell counts are really low, so they have put her on "reverse isolation". This just means in order to protect her from infection, all visitors have to put on a gown, glove, and mask. Whats weird about this is that all the nurses and aids have to put on gown and gloves as they come in and out, but Mark and I dont have to.

She received another transfusion tonight, so I am sure they will be drawing labs again soon to see how this last dose of Fresh Frozen Plasma worked to increase her platelets and clotting. She is on a restricted diet- low to no sodium which is hard for a picky kid! :) They are giving her oxycodone for pain, as they do not want to give Tylenol or Ibuprofen. She is having headaches so severe that light and sound are bothering her. They are also giving her 2 different kinds of diuretics, which seem to be working. She was so excited this evening when she looked down and could see her veins and bones in her feet! The last we were told was they still wanted to try for the liver biopsy tomorrow, though they have begun treatment for the Automimmune Hep. Since they think it may be genetic, my mom is going to see if she can find out my fathers medical history tomorrow, which may be a pretty large task. All in all, things are different but the same. We still don't know any more than we did yesterday.

EMILY

My Mimi. She has had a long weekend as well. She stayed with our good friends through CYT, THe Anderson's. SHe says she had a lot of fun. Her first weekend of Aladdin shows were this weekend. Of course since Mark & I couldn't be there, the rest of CYT spoiled her rotten...but that's ok. I felt awful for not being there for her, was very torn, but in the end felt like this was where I needed to be. THere were plenty of mommy's to care for Emily at her shows. She was able to see her first horseshow this morning also, and even got help her friend Sarah groom her horse. She LOVED it! I overlooked one tiny detail though, how seeing her sister would affect her. When she arrived this evening, I didn't even stop to explain to her what she was going to be seeing and why. I threw the gown and mask on her and ushered her into the room, knowing that Mark, Kayli, & myself were anxious to see her and then I turned to continue greeting our visitors. She came into the room and sat down, and started to cry. She's 9- I just didnt even realize what I was doing. We tried to calm her, but it took seeing her friends Tootie & Lauren dressed up in the gowns as well to take her mind off the situation. She had fun visiting with them and showing them her new Gypsy costume, but every few minutes asked when she could go home.


Mark & Emily are at home tonight, with Granny & Grandpa visiting. Mark said she is ok he talked to her on the way home. Hopefully all will work out so that we can all go see Aladdin as a family next weekend. Will continue to keep updating as I can. Especially tomorrow after we know more regarding the biopsy and bloodwork. Homefully we are moving in a positive direction.
Thank you to all of our wonderful wonderful friends and family for all of your love and support. And especially thank you to all of our CYT friends...no- family, for all of your support, well wishes, and hardwork with the Aladdin production and care of Emily-

Note- the nurse just came in to remind us that Kayli is to be NPO as of right now...no food or drink after midnight which means they plan to do her procedure tomorrow.