As mentioned previously, Ben had not been doing well the first week of January.
We had tried all the rescue meds and after many days, at the suggestion of his doc, we took him down to Primary Children's.
It was a weekday afternoon and there was a storm that was supposed to be coming in soon.
I can't remember why Andy wasn't available but I was going to take him down by myself. I was super emotional and having a rough time. I let my parents know I was driving Ben down and they made me wait until Dad could arrive to drive us. I had packed and loaded Ben in the van and was debating with myself on whether or not I would actually wait, when he showed up. He transferred Ben and the luggage to his truck and we left Andrew and his father in law working inside. Later, on the way down, I was grateful for Dad's help, but at the time, the martyr in me was grumpy :(
Dad saw us safely into the ER room and then he took off for home to try and beat the storm.
I admit, when he left, I probably felt as deserted as I ever had in my life. It couldn't be helped...Dad didn't need to stay...but I felt very alone.
Ben and I waited for probably an hour and half, seeing multiple professionals in that time, answering the same questions over and over but nothing was done.
Finally, someone came in and put an EEG on him. After following it for a while they decided there was enough activity to justify meds so they came in and gave him two different kinds (can't remember which) and then they admitted us. It had been 3ish hours of us sitting in that ER room, mostly by ourselves.
At this point, 4 months later, I am going to have a hard time remembering the details of this visit...they all kind of run together...but I will do my best.
About all I remember about that night is that they came in and had to redo some of his EEG leads.
I think that next morning they said it could be taken off.
If my memory is correct, he slept most of the day.
When he woke up that evening he was super loopy! I got some video of him trying to talk. It was pretty pitiful and funny :) Bless his heart! He was in and out of sleep and I tried to get some food in him when he was awake.
I was thinking, as I was writing this, that after we got him home he still wasn't doing great but then I realized I was probably thinking of the time in Nov/Dec of last year when it took over a week for him to seem to improve.
Then I saw these pics and it appears he didn't recover right away this time either :(
While in the hospital, Dr. Kaur, our new neuro, worked closely with me to try and find a solution. She mentioned surgery as an option at some point. She also said that EEGs aren't really that conclusive and each Dr. interprets things differently. My confidence in her started to crumble. She admitted that she was just throwing out guesses as to what to do next. I feel like we came away with a new plan for when this happened again but I don't remember what it was...we haven't had to use it...Dr Kaur prescribed Depakote (a shot in the dark) as a daily med. We had tried Depakote years ago with no benefit but we were willing to try it again. It has been miraculous! Where he was averaging 8 seizures a month which led to status too frequently, Ben is now going anywhere between 2 and 5 weeks between seizures! And even then, he has one and then he recovers and is good for a few more weeks. *until this morning* He had gone 3 weeks since his last seizure so it wasn't crazy that he had one at 2 a.m. but then he had another one at 7 a.m. He has slept most of the day away and I'm hoping he will recover as easily as he has the last few months. We shall see.
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