I arrived at the hospital at 8:30 this morning to give Jacob a bath. He still had all the gunk in his hair from the last EEG & with another one on the way this afternoon, we had to get it cleaned & ready.
He loves his baths! Eyes open wide for me today & I felt as though he was just soaking in what his mama looks like! It was a bit busy for him today. Dr Jolley, the pediatric surgeon came by to assess him & write orders for the prep work on getting the G-Tube done, i.e. x-ray to make sure there are no surprises.
Yesterday, I had informed Dr A. Johnson that I didn't think we were in any hurry to perform the surgery since it appeared Jacob wouldn't be coming home soon. Needless to say I was a bit shocked to see Dr Jolley this morning. Come to find out, there are only two opportunities for him to do the surgery, this Tuesday or next Tuesday, because he is going on a 3 week vacation. Although he has somebody fill in for him while he is gone, that I'm sure is perfectly capable of doing the procedure, I think I'd rather it be Dr Jolley. I already have a level of confidence with him since he performed Brianna's surgery.
Donna, his physical therapist was by. It was the first time in a week that she was able to work with his range of motion to loosen him up because of all the EEG's he's had this week. However, the EEG tech was there getting him hooked up today & we asked if we could please work with Jacob while these tests were running, which we now can.
His poor legs were so tight. As Donna worked with him, his whole body relaxed, as if to say thank you...I've been needing that for a long time! I did notice that after his legs were relaxed, he wasn't getting startled. He was really calm. Can't help but wonder if that might be a clue to what's going on.
The 'muscle' doctor also stopped by again to follow up with the procedure done on Wednesday. He wasn't able to get a good study of Jacob's muscle's at a relaxed state, so I suggested the possibility of running the tests again while Jacob is sedated from surgery. He thought that might be a great idea & is going to talk with Dr A. Johnson.
Dr A. Johnson also stopped by for a brief visit while EEG was getting him hooked up. I wasn't there at the time, but I don't think there was really anything that we need to discuss until tomorrow's EEG results are in.
The EEG tech hooking him up was not the same one that has done the others. She uses a different method of adhering the electrode's that is SO much nicer on Jacob. It sticks a lot better, but isn't pasty & no need for all the tape on his head. It can only be removed by using a special remover. What this means is, they can leave it all attached & run continuous EEG's without an inconvenience to Jacob. We will now be able to hold him while it's running, because the risk of the electrode's coming off is not an issue anymore. YAY!
Kevin arrived at 5:30 after work & we were watching the EEG monitor. Although I'm far from an expert on reading the monitor, I do know when Jake has a seizure. He had 4 of them in 45 minutes, so I don't think the increase in medication is making a difference. We'll just have to see what the results are.
Overall Status: Stable
Visitors: Grandma & Grandpa
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