Today has been okay. Daniel has gotten some sort of bug and has had vomiting, dinarena (as the kids say at our house), and a little fever today. His medications have been reduced today, and I am expecting to see seizures begin tonight. We will see.
He was monitored by EEG last night and we saw the EMU doctor this morning (not the doctor I shared about yesterday, but his colleague on the unit). He indicated that Daniel is having more sub-clinical seizure activity while he sleeps than we previously realized. He seemed to indicate that this is ESES (also called CSWS), which is a challenging form of epilepsy where there is almost continual spiking of electrical activity in his brain while he sleeps. You can read about ESES here, if you want to. To be honest, I wasn’t expecting this. In the past ESES has been briefly mentioned by his doctor at home, and I think we read a little bit about it, got scared and moved on. So, it really hasn’t been in my thinking. It seems there may be a couple of different kinds or presentations of seizures, which is not at all uncommon. As we approached our visit here, in my mind I had reached some sort of conclusion and as we receive information here, my preconceived notions must be adjusted. This is, of course, the only realistic way this could go because I know so little about what is going on. However, it has thrown me a little and my fear-meter has been running a bit high today.
We continue to have wonderful nurses and good care. Daniel’s night nurse is named Alexa, poor girl, and Daniel immediately asked her to play a song, just like he does with our “Alexa” back home.
Our particular prayer requests for today are: 1) that David and I don’t get this bug that Daniel has. We really cannot afford to have one of us go down with that, so please pray for our health to be good. 2) that we will leave our anxieties with the Lord and just trust in Him and in the process here. We are in good hands all around. 3) that Daniel will have some typical seizures and that good data will be recorded that will allow the doctors to determine what course of action to take.
Your comments and little notes of encouragement and letting us know you are praying for us mean so very much to us. Thank you!