Update: whelp, we are back at the emergency room. Yesterday James had an off day. Very stiff and out of it. Last night we had company and James wasnt very involved with anyone, including his cousins. He went to bed as usual but woke up an hour later. I would go into his room and hold him. As soon as I would, he would fall asleep. I would lay him back down and he would remain comfortably sleeping for a few minutes until he started again. This went on all night and I would guesstimate James had a total of 2 hours of sleep. This morning we anticipated going to the Anthony Rizzo walk off for cancer to support our dear friend Giulie. That unfortunately didnt happen. I decided to take his temperature only because his hands and feet were hot and he ended up having a temperature of 101.6. Maybe its my lack of fever skills as a fairly new mom but I never even knew you could have a fever without having a warm forehead. Lesson learned. He got Motrin and a bath but his temperature went up to 102.3. We monitored his temperature and spent the entire day trying to make James comfortable with little success. He began to look lethargic but he also could have just been exhausted from not sleeping and being so spastic. At around 3:00, Skyler and I discussed taking him to the hospital. I was a little apprehensive because he really only he a mild fever but we just didnt know what else to do. As we began to load him into the car, Skyler called me over to help loosen James up because he couldnt buckle him in. His spasticity was so bad he didnt fit in his car seat. After 5 minutes of work, I called 911. I felt bad calling because it really wasnt an emergency but we couldnt figure out how else to safely get James to the hospital. The crew was awesome as always and approved a trip to Broward General as the doctors here told us they always recommend. Since all of James care has been here, its whats best for his continued care. Luckily James was stable enough to make the trip. On the way over, his oxygen did drop so he was put on oxygen. When he has so much spasticity, its hard for him to take good big breathes. We arrived at the emergency room, his temperature had reached 102.9 and they gave him a dose of Motrin. He got all checked in and the doctor came in pretty quickly. He ordered blood work, chest X-ray, abdominal X-ray, IV fluids, urine culture and nose culture. He is currently on fluids and we are waiting for the results of all of those tests. I mentioned that his urine was not as frequent and brown in color so there is a thought of a possible kidney infection. (Fingers crossed thats not the case) He also mentioned acid reflux because of how we describes James posturing. This is not the first time acid reflux has come up. While at KKI, the doctors said they thought that James might have it and wanted to add an acid reducer to his long list of medications. I didnt want to because we were already changing so many of his medications at the time. Our speech therapist has asked us a few times about it as well. As Im sitting in the hospital bed with him, his ONLY comfortable position is sitting up at 90 degrees. If I lean back at all, he wake up and starts crying. He finally shut his eyes and is resting now comfortably right now. We will wait for his results and hope its just a small viral cough causing the fever and start treating reflux. đąđ -Jenna
Posted on: Sun, 16 Nov 2014 23:53:26 +0000
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