Shortly after my afternoon update, Dr Navarro & Dr Sanders came in after having seen the pathology on the liver. The news was what we had feared. Though they could not 100% confirm the diagnosis of the Autoimmune Hepatitis, they strongly believe that is what we are dealing with. Apparently everything is pointing to that. The bad news was that there is extensive damage to her liver. They are re-starting a course of Prednisone and Albumin- as well as continuing anti-biotics and blood products based on labwork. We are really praying that drug therapy will do what it needs to do. But, in the event that it doesn't, a transplant team is being made aware of Kayli's case, and a transplant physician will be visiting us tomorrow to counsel us on what will happen next, and Kayli is being put on a list.
Her low blood cell counts are believed to be in conjunction with the lack of liver function. And even after receiving a full course of platelets, plasma, and whole blood today, her numbers are still extremely low. They do not see the need for a bone marrow biopsy at this time though after seeing the liver pathology, but she will continue to receive transfusions.
BUSY NIGHT of Visitors
Before the doctors arrived, Mark's softball Team Mom and friend of ours Robin arrived for a nice quiet visit, and while she was here Kayli's Biology teacher Mrs Graham arrived with a large bag of goodies from her entire Biology class! Kayli was so excited. The bag was signed by all of her classmates.
After the doctors left, CYT friends Mrs Robin, Rachel, and Hannah came for a visit. Hannah & Rachel did an excellent job of making Kayli laugh by singing her dinner order while she was on the phone with "room service". It was also good for me to hear how the first weekend of "Aladdin" shows had gone and sounds like we are missing a swimmingly good time with Thomas who is playing Genie!! We will be sure to try and attend a show this next weekend. The next visitor was Jennifer, the nurse who took care of Kayli her first 2 days in the hospital on the 10th floor. She was very sweet to stop by on her way out of work.
After a short break, one of Kayli's former coaches paid a visit along with my friend Minerva and 4 softball girls from school. They were a riot, and Kayli made several comments about having a wonderful time when they were there. She was so happy today with all of her visitors!! Paige, Erin, Kalei, and Michelle brought alot of joy and silliness with them this evening, something Kayli has needed. They also brought 2 huge posters, 1 signed by the entire high school softball team, and the other signed by the high school band!! She loved them!! The girls even danced for Kayli. LOL
It was so good to see her smiling and laughing. And I thank God for such wonderful friends as Rachel, Hannah, Kalei, Erin, Paige, & Michelle.
OH AND MINERVA- thank you so much for the hug!
Uncle Daniel & Aunt Sunny (Mark's brother Daniel and his wife Beth) arrived from California this evening to help with Emily or anything else. Tomorrow night Mark and I might let them have a turn staying the night with Kayli, and Friday I believe they will go see Emily in Aladdin. THey brought Emily this evening to see Kayli, and the girls were happy to see eachother. I think Emily is still not quite sure what to make out of everything, and I think this is going to be a difficult time for her.
Tonight ended with a couple of scares. Not long after all the visitors had gone and Mark and gone home with Emily, Kayli started complaining of chest tightness and said she felt like her heart was racing. On the monitor her heart rate was jumping around a little. Though I attributed this to the flurry of activity today and maybe some anxiety, I told the nurse who called the doctor. The doctor on call came in and examined her, said he didnt see anything readily alarming but to be on the safe side was going to order a chest x-ray and EKG, both of which were normal and didn't show anything unusual. Shortly after that, Kayli cried out that she was hurting. I asked where and she was grabbing her side, right over her liver. I called the nurse, who again called the doctor, who was able to calm Kayli, and the pain subsided. She adjusted herself in the bed and though she is not entirely comfortable tonight, she has calmed down and is trying to get some rest. In the meantime, she the stays by asked me to call Mark and asked him to come back. Since he got back to the hospital about an hour ago, things have calmed down significantly other than the continuous cycle of drugs she is receiving through the night.
Lesson learned: we will begin monitoring the length of visitations starting tomorrow. We want everyone to come see Kayli, and she needs it and it makes her so happy. But we will need to keep visits down to probably an hour. I know that coming from the Woodlands is a long way to come just for an hour, but please don't let that deter you from visiting as it really helps to lift her spirits. The other lesson learned: she does better when both of us are here.
So here are some reminder tidbits: Kayli is at Children's Memorial Hermann in the Medical Center, Room 982. Visiting hours are 9am-9pm, and at this time she is on reverse isolation which means you will need to wear a mask when coming into her room, and you will have to wear a plastic gown and gloves if you wish to touch or hug her. Also, if you wish to send or bring gifts (totally not necessary) please do not send flowers or plants. She seems to really be enjoying personal notes. And if you go the hospital's website you cen send an eGreeting which gets delivered to her room! Also if you have been sick recently please don't come. She is enjoying getting text messages, her number is 832-764-2567 (text messages only). Enjoy some pictures from today...
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