Kayli's friends Cristene, Rachel, & Carly had movie day with Kayli yesterday. It was so nice for her and they had a blast. Even when Kayli needed to nap the girls just hung out and watch movies. They all wore matching shirts that say "Get Well Soon" & their names on the front, then on the back was a picture of the girls with Kayli earlier in the week, and "Team Kayli" with their slogan "You Betcha!" LOL It was really cute! Here are a couple of pictures Granny Norma got with her new camera phone!!
Tomorrow starts all the rug-a-ma-roo again. They will start drawing labs again to see how her blood cell counts are and if her clotting (INR) has improved over the weekend which would show the liver is or isnt responding to the Prednisone. The original thought was she could possibly come home on Monday, but now they are thinking more like Tuesday. She is getting a full work up from the transplant team tomorrow, checking all systems of her body. Once all that is completed and if they determine her bloodwork numbers are stabilized, then possibly she can come home to await a new liver. She wont be able to go back to school for awhile because of the medications she will be on, so Mark and I are going to contact Conroe ISD to see about a possible program they have when things like this happen...I guess its a step away from Homeschooling. So still alot of wait and see...
I just realized my post from yesterday did not post.... so here is what I wrote yesterday...
This has certainly proved to be a long week. But I almost can't believe its Saturday already! I don't have much different news to report, so just going to share with you the past couple of days...
Yesterday was relatively quiet. Doctors must have been late in making their rounds. I missed all physician updates. I did not arrive early enough to the hospital to hear from Dr Sanders, and I left too early to hear from Dr Navarro. But its ok, Mark was there and I am sure if there had been anything real significant he would tell me. I think it was probably all just more of the same. Her INR- or clotting factors are still not responding to treatment, but the doctors say sometimes it may take up to a month to show a true response. So she is still considered a high risk for bleeding. She is on an immunosuppressant, so her risk for getting sick is pretty high right now too. She had asked the doctors if she could take a little 4 hour daytrip out of the hospital on Sunday to go see her sister and CYT friends in "Aladdin", but for now she will have to settle for what video I can get. The doctors say its a very high risk for them and if something were to happened, they would be in very big trouble. I can completely understand.
She is officially on the liver transplant list- and they apparently have given her a higher MELD score than they originally thought they would. If a liver comes along that is a good match for her, they will meet urgently to decide if it is the right time, and they have the final say and can turn down the liver or accept it for her. If they turn it down then it goes to the next best candidate, if they accept it we will have 2 hours to get to the hospital and get her ready for a 10-12 hour surgery. They have given her a weekend long break from blood draws and labs. Monday morning at 4am she will get her next labs drawn to re-evaluate her need to stay in the hospital. They may send her home, but it will be awhile before she can return to school if at all due to the risk of getting ill. If that happens Mark and I may look into the option of Homeschooling- we have lots of homeschooling friends that can help point us int he right direction I am sure. :)
They have ordered a step-down in the level of care she is recieving and may be moving her to a different floor on Sunday. The only time they will have her on heart monitors now is while she is receiving medications. Great news for Kayli- when she started in this ordeal 2 weeks ago, Kayli weighed in at 178lbs. As of last night she weighs 149lbs which is only about 5lbs above normal! So poor baby was carrying around 30lbs of extra fluid in her legs and belly! Today a group of Kayli's band friends are coming and bringing the movie Twilight. The child life coordinator is going to allow the kids to watch the movie in the movie theater that is on the 9th floor of the hospital!! She is so excited. The kids coming are all excited as well! Mark is on his way there now to play host Daddy, but we just realized that I have the camera! :( Should be a very fun day for Kayli.
As for me, I will be spending my birthday at CYTs Aladdin. I haven't been able to help my committee with shows- and it's very hard for me to do things like that...just step back. I will get Emily ready for her show, and see how much video I can get for Kayli. Then after the matinee, Mark will be taking me out for a dinner date for my birthday!! Emily will be busy with her evening show and Granny Norma is staying with Kayli at the hospital tonight. Uncle Daniel & Aunt Sunny head back to California today. It was so wonderful having them here and I know Kayli loved spending time with them! Last night we took them and Granny & Grandpa to see Aladdin and we all had a great time. Thats all for now- haave a great weekend everyone :)
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