Aaron is still not feeling well. He went to see the neurologist this morning. Dr O said the Onfi is not working for him so we are going to start to wean him off of it while starting him on Keppra. He said his EEG was VERY abnormal and he is so surprised that we are not seeing more visible signs of seizures. He just stares, or looks off to the side. Sometimes his eyes roll up into his head, but we have never seen any more than that. That is all they saw on his 23 hour EEG too. He has been sleeping more, sometimes 18-20 hours a day. His balance is off and he is no longer pulling to a stand or taking steps. When he crawls he falls over to the side and sometimes his arms just give out. It is so hard to see him struggle and not feel good. I am hoping that the Keppra can get his seizures under control so he can begin feeling better.
Aaron has not been eating (has not eaten in over a month). He has not been wanting to drink and that is dangerous for him since he has Diabetes Insipidus. His temperature has slowly been dropping since he was discharged from the hospital. It has begun to fall below 96 degrees and was even as low as 94.8 this morning. It is taken longer for his temp to come back up and it is not coming up as high. They would like it to stay above 97 degrees. So it was off to see Dr C. Everyone is worried about Aaron. We were 30 minutes early for our appointment and they called us right back. They didn't even have his chart when the nurse came in the room to see how he was doing. He has lost 3 pounds since Saturday and he looks awful. His heart rate was good and his mouth was moist so he didn't need to go to the PICU. Dr C really wants to keep him out of the hospital (me too!!!) so he wanted to see how he did through the night. We were to push fluids and to continue to use his warmer blanket. I am to call first thing in the morning to let him know how he did so he could decide if he should be admitted for fluids. Dr C did say that maybe it is all the seizures making him so tired and not wanting to eat and drink. That would be great news as the seizures can be controlled with the right meds. He said if that is not the case then he Dr P and Dr C (both from the PICU) will try and determine what is going on with my sweet angel.
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