A Visit to the ICU

Well, here I sit awake watching Kayleigh sleep. If only I were watching her sleep at home! For those of you who worry about me, I did rest some last night. Many of you who check in on Kayleigh probably have no idea what's going on. On Thursday, Kayleigh had an episode at school where she lost some movement in her neck, arms, and legs. She couldn't hold her head up well, walk without wobbling, or grasp her sandwich and give herself a bite. I'm thankful for my parents who are close by to the school and were called by the nurse because Jason and I were at work. I was able to get her in to see her doctor that afternoon, but by the time we got there she was doing much better. Happy, smiling, walking with only a slight wobble, able to do the exercises she was being put through. So her port was accessed and labs were drawn, then she was sent home. She was sent home since she looked so well and with the doctor knowing she was going to be back at 9:00am the next morning for treatment. He said what she had was neuropathy from the chemo, vincristine. So we took her home and led a normal evening. The doctor even told Kayleigh she could go to dance and so we let her just to watch. She did dance a little at the ballet bar. She was fine the rest of the evening, ate and slept well. She actually slept through the night which she hadn't done for the previous two nights. Needless to say, she wasn't okay just shortly after she woke up Friday morning. She got up fine, came out to the family room where we were getting the other two ready for school, and curled up on the couch. About 10 minutes passed and she wanted to get up and have some breakfast herself. Well, she couldn't push or pull herself up. Her arms wouldn't work for her and neither would her legs. Her head began to flop like she didn't have control of it either. She was talking fine at this point. Then her lips began to go numb shortly after leading to very slow speech. The slow speech led to  and unable to understand speech within 20 minutes or so. As she fell asleep on the couch, I called the doctor on call to see what we should do. I wasn't thinking this was the neuropathy but I didn't dream it was seizures either. The doctor suggested we wait and come to her scheduled appointment because going through the ER would probably take longer. So we listened and tried to wait patiently. However, Kayleigh woke up and at this point was drooling from her mouth and couldn't get her words out at all. That was it, I had Jason carry her to the car and we headed in to the appointment a half hour early. I do wish I would have called for the ambulance because now knowing it was a seizure I fear it went on too long. They took us in right away and began to examine Kayleigh. During the examination she seemed to be getting better. The doctor sent her for a CT scan though and while waiting for the hospital to get the okay from insurance, which angers me a little she had to wait, she had yet another seizure and a bad one too. Finally they took her in to do the scan which she seemed to do fine with and ended up talking a bit more normal saying, "I love you, Mommy!". Music to my ears!! While in the scan we were told it was seizures she was having and that she'd be placed in ICU because they could best watch over Kayleigh. I never dreamed we would be there with one of our girls! Kayleigh had a couple more slight seizures but was better by midday after receiving medication. They did an MRI and lumbar puncture. All three tests showed nothing, clear fluid, no brain damage, no new cancer cells, no tumors. What the doctor is thinking caused the seizures is one of the two chemotherapies both of which have a slight risk of causing. The doctor is leaning towards methotrexate toxicity. So she won't be receiving anymore of that for at least a year. He'll be switching her to something else. He is stopping phase 3 as she only had a couple treatments left and giving her a week or two break, then on to phase 4. We're not really sure what it involves. We're pretty sure she's going to have to be on seizure meds for the duration of her treatment plan, the next two years, then they'll figure things out from there. All I know is this has been a horrific experience for her, me, and Jason. I know I'll have nightmares about how I saw her, like a vegetable. :( She's going to have an EEG today and then will be moved to the HemOnc unit for a couple days or so. I ask that you please keep Kayleigh and our family in your positive thoughts and prayers. I bet you've been praying as you read this already and I'm sure I don't need to ask for them, just feel the need to. I will continue to keep you updated.