Thursday. This morning I woke up to this sweet boy cooing up at me.
We came up to UCLA Tuesday for a routine EEG for a study we signed up for when we were here a year ago. They called this morning and were concerned about what they saw on the recent EEG and how different it was from the one 6 months ago right before he started having seizures. Dr. Hussain called me this morning during therapy, we talked for almost half an hour and he asked if we could come in today... As in immediately.. So we are back at UCLA. They are wondering if everything is being done for him clinically that we can. I really appreciate the second opinion from first rate doctors. So here we are. :)
Originally Dr. Hussain (who read the study EEG) wanted him to come up immediately and be admitted through the emergency room. I was worried about driving all the way up there and then not being admitted and having the ER cost. Thankfully it was not an issue. He emailed me and said to go through the admissions office instead so they knew we were coming and had a room ready for us. Soooooo much better. We were admitted quickly and in our room within probably 20 minutes of arriving. The nurses checked us in and then we waited for the EEG techs.
It was very surreal being back at UCLA this weekend of all weekends. Sunday marks 1 year exactly since Parker fell. It was so surreal, yet so positive being in the same hospital being surrounded by many of the same people. I had gone to visit the PICU nurses on Tuesday and that was both hard, but good. The flood of emotions. I was surprised through the whole stay this time how positive my memories are- of the smells, hand sanitizer, elevators, restrooms, beeping noises, the nurses, hallways, the cafeteria, food, juice, even my cashier was the same as a year ago.
The EEG tech that came to put on the the leads name is Jimmy. He is the same tech we had last year. I don't remember if he put them on (I was a little preoccupied), but I definitely remember he was the one that took them off. I remember so well the pungent smell of the glue. It was even more surreal that while I was talking to the intake Dr (resident), the child life specialist (Alicia) from a year ago saw our name on the board and came to see if it was us. I had visited her on Tuesday so "Parker S" was on her mind. It was us. She came to visit and helped with Parker. It was so weird and cool to be at the bedside with two familiar faces.
Anyway, enough nostalgia. He had two seizures before they got the leads on (and he'd had them every half hour all morning) and then proceeded to have NONE all afternoon and evening. Silly boy. But, he did have several 10 second staring spells that I was concerned were seizures. They have him on continuous monitoring with a video camera. There is a push button that you push whenever you think he might be having a seizure or something you are concerned about. That marks the EEG and makes it much easier for the neurologists to focus on the times of concern. So I pushed the button for several of those and they were able to rule those out as seizures. Great!
Originally Dr. Hussain (who read the study EEG) wanted him to come up immediately and be admitted through the emergency room. I was worried about driving all the way up there and then not being admitted and having the ER cost. Thankfully it was not an issue. He emailed me and said to go through the admissions office instead so they knew we were coming and had a room ready for us. Soooooo much better. We were admitted quickly and in our room within probably 20 minutes of arriving. The nurses checked us in and then we waited for the EEG techs.
It was very surreal being back at UCLA this weekend of all weekends. Sunday marks 1 year exactly since Parker fell. It was so surreal, yet so positive being in the same hospital being surrounded by many of the same people. I had gone to visit the PICU nurses on Tuesday and that was both hard, but good. The flood of emotions. I was surprised through the whole stay this time how positive my memories are- of the smells, hand sanitizer, elevators, restrooms, beeping noises, the nurses, hallways, the cafeteria, food, juice, even my cashier was the same as a year ago.
The EEG tech that came to put on the the leads name is Jimmy. He is the same tech we had last year. I don't remember if he put them on (I was a little preoccupied), but I definitely remember he was the one that took them off. I remember so well the pungent smell of the glue. It was even more surreal that while I was talking to the intake Dr (resident), the child life specialist (Alicia) from a year ago saw our name on the board and came to see if it was us. I had visited her on Tuesday so "Parker S" was on her mind. It was us. She came to visit and helped with Parker. It was so weird and cool to be at the bedside with two familiar faces.
Anyway, enough nostalgia. He had two seizures before they got the leads on (and he'd had them every half hour all morning) and then proceeded to have NONE all afternoon and evening. Silly boy. But, he did have several 10 second staring spells that I was concerned were seizures. They have him on continuous monitoring with a video camera. There is a push button that you push whenever you think he might be having a seizure or something you are concerned about. That marks the EEG and makes it much easier for the neurologists to focus on the times of concern. So I pushed the button for several of those and they were able to rule those out as seizures. Great!
What a week of ups and downs. Thanks for writing it day by day. I felt your relief and then your plummeting pain at the end of the week. That is so, so hard. I am so glad you saw Dr. Hussain. But that is still so hard.
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