Sorry for cutting the story short yesterday… especially right at the good part, right?
So to remind you where we left off, by Monday morning we had met with the surgeon, talked with the rehabilitation hospital… everything was on track to begin therapy right away and then have surgery in 2-3 weeks.
But the neurologist was concerned about this seizure. He actually had another seizure back in January, but like I mentioned before, normally it’s years between seizures so something seemed a little off to the neurologist so she ordered an EEG.
The EEG Test:
Monday afternoon was the EEG. Ellie played hooky that day so she was excited to watch. The technician hooked Ben’s head up to a bunch of electrodes to try and cause another seizure then get some data.
Ben has had this particular test a couple times in the past. It’s never worked. They’ve never been able to “make” him have a seizure on command.
This time the technician only performed two little tests.
I asked if Ellie and I should leave the room, but the technician said we could stay. No big deal.
For the first stimuli, Ben had to breathe huge breaths in and out over and over again for three straight minutes. That might not sound like very long, but it seemed like forever. After two minutes you could tell it was getting to Ben. But Ben was powering through it. At the two minute mark, he grabbed a pillow near his side and started clenching it. Then with about 30 seconds left he started rocking back and forth with the pillow.
Ben made it through the first stimuli. He was panting afterward a bit so the technician told him to take a minute and catch his breath. His oxygen alarms starting going off and a nurse ran in to get him a nasal oxygen tube to help him breathe better.
Next was the flashing lights. Ben has never had any issue with light sensitivity before, especially during EEGs. The light just flashed on for a couple seconds, then off. He had to close his eyes, open them again. Rinse and repeat.
Then the technician told him to go to sleep. Ben was lights out in 2 minutes flat.
After about 5 minutes, the technician called his name.
“Ben.”
Then a little louder.
“Ben, wake up.”
Then he shouted.
“BEN, OPEN YOUR EYES.”
Ben all of a sudden opened his eyes wide and went straight into a seizure. It wasn’t a grand mal one like he usually has. His eyes fluttered, his jaw was chattering, and his head was bobbling around.
The technician popped up out of his chair and immediately got on his phone trying to reach his boss.
During this time the tech was on the phone, Ben started to come around. The technician then started asking him questions. It took Ben a minute to realize he was even in a hospital.
Ben then asked what happened and the technician said: “we tried to give you a seizure and it worked”. Ben’s reply, “well that was mean, why would you do that?!” LOL.
After that, the technician told Ben that he would have to continue the EEG overnight.
The Test Results:
Jump to the next morning.
We asked the first nurse that came in about his overnight EEG and if they had any answers yet. She said from the initial readings that they didn’t find much, but the neurologist would be looking at it more closely as protocol.
A couple hours later the neurologist came in. She said that during the night it seemed that Ben had around 14-15 mini seizures or seizure type activity. All seemed to be in the left side of the brain.
The neurologist also thinks that when Ben is having strong auras, they’re actually seizures…. just not the grand mal seizures that we’re used to seeing.
The neurologist decided to keep him in the hospital awhile longer (not heading to the rehabilitation hospital as planned) and Ben would move to the neurology floor for additional testing. They want to find the source of the seizures or at least get them under control before he goes under anesthesia for surgery.
That’s the other thing… we found out Tuesday afternoon that Ben would now need an additional surgery before he leaves the hospital.
Taking it All In:
My main concern right now is the seizures that caused the fall in the first place and the spinal cord injury. I really want to find an answer fast, or at least get the seizures under control. My biggest worry is that he’ll fall again before his surgery and injure his spinal cord beyond repair.
Ben is doing really great though as of now. He’s getting stronger each day in his hands and legs. He also makes the nurses laugh non-stop. They all say Ben is their favorite patient because he’s so quick-witted (even on pain meds) and doesn’t complain too much or push the call button too often.
Thanks again for all the prayers and love. I’ll try to post Part 3 soon!
Miriam Ayala says
My ???????? prayers are with you guy during this trying time. Hope you can enjoy the Easter weekend in a special way!
Chrys says
My thoughts and prayers are with you and your family!!!
Linda Smith says
Prayers are continuing for you all. Ben is in good hands and the best place to sort it all out. He is in a hospital staffed by people who care. Please take care of yourself and Ellie. If you don’t take care of yourself, you won’t be any help to Ben and Ellie. Please keep us posted as to his progress and all. Do NOT feel bad about not having time to post. We can wait.
Hang in and best wishes to you all,
Linda Smith
Ottawa, Ontario
Debby says
Praying for inner peace and strength for all of you.
Susan says
Prayers for Ben and your family. Put your faith in the Lord and He will take care of everything.
Wendie says
Thank you for the updates. Prayers for your dear Ben, and to you, Ellie and family. I’ve missed you, but you have your priorities straight. <3
Ann Coombe says
Nothing puts life in true perspective like a health crisis with a loved one! My thoughts and prayers are with all of you! You have been through soooo much. Blessings to you!
Jenny says
Oh my goodness, what a roller coaster for you all! I’m so happy to hear he’s getting stronger. I will continue to pray for answers to the seizures!
grammy goodwill says
Prayers for your dear husband and you as well as you journey through this. What an ordeal it must be.
Larain says
I feel for you, although I do not really understand and how could any of us. You and your family are very strong and I hope you are blessed with a great outcome.
bonnie says
Thanks so much for the update on your husband. I’m praying that he will have a good recovery.
Beverly says
Still praying for all of you. I’m anxious to read part three but so sorry you all have to experience this.
Nikki says
Thank you for keeping us posted, I follow you on instagram.. I’ll be continuing to pray for you and your family.
Cecilia says
Saying a prayer right now for Ben and his situation; that the doctors can find the answers and healing can begin. Also prayers for you and family while you deal with the stress and all.
Pam says
So sorry to hear first of the loss of your baby, then for Ben. Praying for all of you.
Kirsten says
Praying for you and your family.
Barbara Whitaker says
Praying your husband begins to heal. My 2-4 year old daughter had 3 febrile seizures (grand mal) 30+ years ago and was put on phenobarbital. She remained on the drug thru around age 4; then I decreased it slowly and …. she didn’t experience another. I had them as a child, so concerned that she may have passed on to her children. I really feel a neurological condition requires a person to not get too tired or run down, and all this is very hard to keep on track with a young family. Take plenty of time for everyone to rest, relax…my husband experienced one while driving a truck cross country with his brother, he was up all night and exhausted, and may have experience another one …during his 30’s. We worked very hard at getting out of debt, paying off all mortgages, and just relaxing and now we are in our 60’s and looking forward to the future. Bless you and your family!
Carol McCollum says
Sending prayers!! Waiting for part 3… You posted part 2 10days ago…. You’ve got many people praying for you & Ben …. and waiting for your update…
bonnie says
Erin, I’ve been praying for you and your husband. Please let your readers know how everything is going.