Kayli Update

So I havent kept up with this blog in a long long while. I thought this might be a good time to start back up.

Text messaging & emailing is getting difficult and Facebook is blocked in the hospital so it is hard to update and have everyone get the latest. This way I can send all this link and you can go to it at your leasure and stay up to date.

For now, I think most everyone has the beginning of the story... if you don't I'm sorry- just know that this came on pretty suddenly.

Basically, Kayli's liver is not functioning correctly- but it was a very round about way for us to find this out. But on Friday 10/30 Kayli saw a Pediatric Liver Specialist in the medical center. They did bloodwork and and prescribed her a diuretic. They ordered a liver biopsy which was to be done on Monday 11/2 on an outpatient basis to determine what is causing the liver to not work. They suspect 'Autoimmune Hepatitis', which they believe was given to her by genetics. At this point there is no history of anything through Mark or myself, but truth be told I do not know enough about my father's medical history to rule it out.

We went home on Friday with a pretty good feeling, like this was something that was manageable and the liver biopsy would be a big deal...but not that big of a deal. We asked Kayli what she wanted to do Friday and she said she wanted to go to the football game with the band, she wanted to be with her friends. We felt this was a good idea. So we dropped her off at band practice. In the meantime we were waiting for the dr's office to call us back with a time for the liver biopsy to be done on monday. I was glad we were back at home, I was able to get Emily ready for Opening Night of Aladdin. Shortly after dropping Kayli off at band, Mark spoke with the Physicians Assitant. Kayli's bloodwork came back and the numbers were not favorable- platelets low and clotting factors not appropriate. So in order to do the biopsy on the liver on monday, they needed to admit her to the hospital so that she can receive a blood transfusion and vitamin K injections to help with that.

She was admitted Halloween morning. Things were very slow going at first. Once they got us checked in, it seemed like there was hours in between each happening. They had tried to avoid doing the transfusion, but even after the vitamin K, she was still anemic and her numbers were worse...not better. So the transfusion was ordered, and finally started around midnight. Early this morning they drew more blood and ran more labs. Again, her numbers are getting worse, not better.

There was a flurry of activity this morning around 8am. Nurses, pedi transport nurses, doctors, and a team of interns all came in and out and scared Kayli (& us) pretty good.

Bottomline this morning, they do not want to wait to do the biopsy to start treatment on her liver. They have started her on a regimen of Albumin and Prednisone and continuous monitoring. They will be inserting a Central Line to help with med administration and frequent blood draws, and they will be moving her to a room that is next door to the ICU (IMU is what they are calling it). For now they are predicting she will be here in the hospital at least a week. She may have to have more transfusions, and they will be doing another abdominal ultrasound for comparison and set a baseline. They also have her on Fall Precautions, do not want her falling and bleeding or bruising any more.

Her spirits were really high yesterday, not so much this morning. Mark and I are starting to talk about a schedule of who needs to be where. Emily has one more show this weekend, and then need to work out how she will be cared for. And at this point our animals have not been fed or let out to potty since yesterday morning (poor babies!!) We both really wanted to go since we are only in one car and need more clothes and a shower, but we also both DONT want to go and want to be here for all the new moving and treatment.

Mom is holding up ok, or at least I think I am. I am very torn, I want and need to be here with my daughter, but I also started a new job this past week, and not sure where I should be starting tomorrow. Dad is doing ok, he is trying to remain his calm collective self- but obviously not succeeding.

Thats it for now I think. If you would like to visit Kayli, please feel free. I know she would love the company as she can only take so much of Mark and I. She is in Children's Memorial Hermann hospital in the Tx Medical Center. She feels a little silly being in a pediatric hospital, but all involved felt like this would be the absolutely best method of care for her given she wont be 15 til next month and doctors and nurses will be WAY more attentive & involved. Currently- the number to her room is 713-704-9171 Room# 1033...but as I said that will be changing today, just not sure when we will let everyone know. You can also text her a message of encouragement at 832-764-2567, be sure to put your name.