I stayed with Kayli last night. Mark went home with Emily to take a break and spend some time with her. Mark's mom and step-dad are also staying at our house to help with Emily. It was a long night without much sleep. Kayli received another transfusion last night, then throughout the night they administered two rounds of antibiotic. Around 4am, during the second round, Kayli began to feel what they call "red man's syndrome". She was itching all over and her face was flushed. Apparently this is a completely normal side effect of Vancomycin. The nurse, Lauren, gave her Benadryl and the itching subsided, however Kayli was awake and could not go back to sleep. Between 5:30 and 6 we both started to doze on and off, but at 7am the flurry of people started again.
Kayli's bloodwork was still not great, but good enough to do the liver biopsy so they jumped ont he chance to do it while conditions were good. Before we even had a chance to brush our teeth or change our shirts, the anesthesiologist had come to do his assessment and a transport team had arrived to take Kayli to Interventional Radiology to do the liver biopsy and also insert the PICC line. She acted cool, calm, and collected but the look on her face said otherwise. I think it all happened so quickly- neither of us quite knew how to react. I texted Mark and he and his mom were on their way back down to the Medical Center, but weren't going to arrive in time to see her before the procedure.
I followed the transport team with Kayli, but they went down several back hallways and elevators, and I got completely turned around. I am sure it didn't help that I was flustered anyways. We finally arrived in a holding area where another team of doctors and nurses greeted us. SHe was able to watch a little of "Regis & Kelly", then they wheeled her away with one last "I love you Mommy".
I did my best to hold together until she was out of my sight, or I was out of hers rather. Then I made a beeline back to her room so that I could change and brush my funky teeth finally. :) It was like a maze finding my way back, but I learned in Memorial Hermann if you can just find your way back to the atrium with the escalators, you can find yourself. I headed upstairs and rain into my sister-in-law, Claudia; I dont think I have ever been so happy to see a familiar face. I changed and we headed to the children's surgery waiting room, and were joined by Mark & his mother shortly after.
The wait was long, at least 3 hours. Mark & I both began to worry a little- as this procedure was not just a normal liver biopsy. Because of her ascites and risk for bleeding, they did an ultrasound guided biopsy through the jugular vein in her neck. I had never heard of this before. Finally Dr Cohen, the Interventional Radiologist who oversaw the procedure came out to talk to us. He said the procedure went well and he had gotten a very nice size peice of liver for pathology and the PICC line insertion was simple. We were able to see her in the recovery room, and she was sore but seemed to be doing very well, and they shortly trasnported her back to her room. She was ordered on bed rest for at least 6 hours to avoid risk of the liver bleeding- which disappointed her. She was tired and out of it, but also ready to move around. I left this evening to come home and see Emily and get some rest. When I left she was getting ready to get up and move around and I ordered dinner for her also- she ate a hamburger.
Shortly before I left, Dr Sanders, one of the attending physicians, came by and gave us an update:
He ordered more labs drawn to test for liver function. He wants to see if the Albumin and Prednisone have made any changes. Her ascites and edema have improved greatly (fluid in amdomen and legs). The antibiotics she is receiving almost continuously is to prevent infection in the abdomen from all of the fluid retention- basically to protect her other organs. We will find out the biopsy results tomorrow, I only hope I am down there early enough to be with Mark and Kayli when they arrive. Her bloodwork numbers are improving, though not as fast as they would like. But her white blood cell counts are up which may lead them to remove her from the reverse isolation! :) He is a little concerned with some numbers regarding her kidneys, but he did not specify the concern, just that some number regarding her kidneys is elevated and he wanted to re-test. Also they are now involving the Hematologist. The thought being, she has received several transfusions, and receiving another tonight, but her blood is not responding the way they would like, and apparently even the worst liver damage possible would not prevent trnasfusions from helping in such a young, otherwise healthy girl. They suspect and issue with her bone marrow, and following the liver biopsy results, may order a bone marrow biopsy to determine why her bone marrow is not doing what it is supposed to be doing. Mark said she seems to be in good spirits tonight and sleeping off and on, but is very anxious to have visitors, and would like very much to see her friends since they do not expect to discharge her anytime soon.
Again if you would like to visit, she is at Children's Memorial Hermann, Room 982. You can text Kayli at 832-764-2567. She is enjoying keeping up with all who have texted her. She cannot receive flowers at this time- but balloons, stuffed animals, and Twizzlers are appreciated :).
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