The week has gone from crazy to crazier! After Alex's labs Monday and a visit to the pediatrician, it seemed that Alex had a virus and we were going to stay home and manage him from there. However his liver enzymes had jumped about 150 points from last week so it was decided that we needed to repeat labs on Tuesday.
Tuesday's labs were not good. His CBC showed that his body was quite neutropenic and his liver numbers had jumped by about another 100 points. But he seemed to be feeling better.
Wednesday his cbc looked the same, but his liver once again jumped by almost 100 points. His cough was also starting to sound pretty nasty.
Thursday's CBC was marginally better and his liver numbers while still trending up, did so by a much smaller amount. I really began to think we might escape an admission. However, my little Buggy had other plans! He was watching TV in his room. He got down from his bed to get a book and his tube was caught on one of the drawer knobs (He has a captain's bed). As he went for the bookcase, his Jtube was pulled out. He cam out to the family room crying, bleeding, holding his tube in his hand. I quickly inserted something to hold his stoma open then began the mad dash to pack and get to the hospital. We made it to the ER about midnight. After a long night in the ER with virtually no sleep we made it up to a room around 5:30 this morning. There was still no sleep to be had as our room was a revolving door of people coming and going. After lunch Alex and I crashed and slept for several hours. We were awakened about 4:00 by someone coming to take us down to the OR. We waited for a while. Alex was nervous as he hates anesthesia and we were using someone new to us. Alex was finally taken back for a VERY short surgery to replace his tube. We spent a short time in PACU before heading back to our room. As soon as we got up to the room, I had a feeling something wasn't right. I couldn't put my finger on it, I was just uncomfortable. A resident came in and I expressed my concern that Alex was not on monitors so soon after surgery and with him still not awake. Then the nurse came in and I told her his tongue seemed swollen. Another resident came in and Alex started seizing. She was worried and quickly to made the decision to transfer him to our "normal" unit. (He had been on the general peds floor). We also hurried to give a dose of keppra (his seizure med). Alex seized off and on for about an hour and a half. His heart rate was very high with each seizure and he was having a hard time with his orientation, not to mention the involuntary movements of his legs, arms and tongue. We have run labs and he is finally resting comfortably. His little face is red as a tomato, not quite sure what that is about, but everything else seems ok. I am hoping the seizures are over. No matter how many times you see a seizure it is always scary. I am so thankful for the incredible doctors and nurses who always take such good care of Alex and were so quick in acting tonight.
Please pray for a peaceful, restful night for both Bug and I!!!!