One Year Ago

One year ago today was the worst day of my life.  It was the day that I walked in to Ben's bedroom to get him up for school and found him unconscious on the floor after vomiting during the seizure he was still experiencing.  We didn't know at the time what was happening, but rushed him to the ER in town (he had another seizure during the drive), where they stabilized him, ran a CT scan (during which he had 2 more seizures), then made arrangements to transport him by ambulance to the Children's Hospital in nearby Tacoma.

Here he is in the ambulance:

I still vividly remember how terrified I was to find him on the floor, stiff and whimpering, unable to get any kind of response from him.  I tried to sing to him in the car on the way to the ER but could hardly get the words out because my throat was thick with tears.  I was so afraid that he was dying, or that he would survive but that something happened that would affect him permanently and change who he was.  I got out of the car at the ER drive-up to take Ben in while James and Rachel parked the car.  Rachel said to me "Mommy, your face is all wet."  She didn't seem to take in the seriousness of what was happening.  And in a way, that was a big blessing.

We waited and watched while the medical team got him hooked up to tubes and machines and checked out his vitals.  He tried to pull away when they went to put the IV into his arm, and it was good to see a little fight in him.  They took him for his CT scan, and brought him back to wait until the ambulance was ready to take him to Mary Bridge Children's Hospital.  While we were still in our local ER, the wife of James' former boss, who worked at our local hospital, came down with a nurse friend, and they asked if they could pray with us.  I appreciated their calm presence and their ability to pray when it was hard to form words in my own mind.

My mom came to pick up Rachel and take her to school for us.  The ambulance arrived, they fastened Ben's carseat onto a gurney and got him buckled in, and I rode with him to Mary Bridge while James followed in our car.  Ben cried out when we went out into the cold air to load him into the ambulance, and it was like balm to our souls to hear.

We traveled to Tacoma, then we waited in a room in their children's ER until a regular hospital room was ready for him.  We had several people come in to check on him and ask us questions, and some of them would say "He's going to be just fine!"

I was not going to trust and believe that until I saw Ben's eyes open and could see him interact with us and know that he was really still in there.  I just needed to see it for myself to feel better.

The medicine that they gave him at the first ER to stop his seizures worked, but it also made him extremely sleepy.  So it became a waiting game to see when he would wake up.

After taking Rachel to school, my mom had stopped by our house to get a few things for us, then picked up breakfast and brought it to us.  She waited with us at the hospital after that.  James' parents came over from Bremerton and waited with us, too.  The hospital chaplain stopped by.  I wanted to ask him "Are you new here?", because although he was well-meaning, he didn't quite seem to know what to do.  It was strange.  Ben stirred in the noon hour when the nurses came to mess with his IV, even giving a protest, then he went back to sleep.

Our friend and music pastor, Patrick, came over to be with us, too.  By that time, it was mid-afternoon, and I was on the phone with my friend Jennifer, asking her to take Rachel home with her from school (her boys go to the same school).  And while I was in the hallway, Patrick stepped out of the room and gestured to me, and I knew my little man had finally woken up.  I walked back in to see such a beautiful sight:

I'm sure it was very disorienting for him.  The last thing he remembered was probably being in his room that morning before the seizure started.  I had heard him chattering a little shortly before I had gone in there and found him, so it hadn't been long.  But then it was probably really strange to wake up in a hospital room with a tube in his arm and machines all around and people staring at him, some of whom he knew, some of whom he didn't.

He stayed awake for about half an hour before he crashed again for several more hours.  We had ordered pizza from the menu for him in case he woke up hungry.  He woke up again a little before 7, and we were able to get him to eat, first with some persuading, then with more enthusiasm.

Not too long after dinner, a tech came by to do an EEG on Ben's brain so that they could try to determine if Ben was still experiencing unseen seizures or if there was anything else they needed to see in his brain activity.  We were skeptical that he would be able to attach roughly 2 dozen electrodes to Ben's head at all, much less in a way that they would stay adhered long enough for him to run the test.  And we didn't think Ben would stay still long enough for the test, either.

Much to our surprise, the EEG tech got every single one of those electrodes on.  He had such patience, and when Ben would start to move around, he'd just wait until Ben settled back down.  He reapplied a few that Ben loosened, but when all was said and done, everything was on that needed to be.  They were hoping to do both waking and sleeping EEGs during that time.  I sang to Ben and played some videos on my phone to keep him still during the waking part, then he fell asleep partway through, so it worked out perfectly to do the sleeping EEG, too.  We were thankful to God for helping Ben through that.

It was shortly after 10pm when the pediatric neurologist came to go over the results of Ben's EEG.  They had had 4 other children with the onset of seizures in the hospital that day, so she was quite busy.  It turns out that he was still having little seizures in his left and right frontal cortexes.  That, coupled with the lack of a fever or anything else preceding his seizures, indicated that he had epilepsy.

Interestingly, this neurologist started out as an autism specialist before moving into neurology, so in addition to treating Ben's epilepsy, she also performed a more thorough evaluation on him, and his diagnosis was changed from PDD-NOS to Autism.  Both are on the autism spectrum, but Autism is a clearer diagnosis.

We've had to make adjustments in Ben's seizure medication, changing to a different one that caused less behavioral issues.  His sleeping patterns have not settled back into the regular good nights of sleep that he was getting before his seizures started.  His focus at school was totally shot for a while, which is why he was assigned a one-on-one paraeducator.  He's doing much better now in school.  We're hopng to figure out the puzzle of sleep and get him back into good nights of sleep on a more frequent basis.

Above all, we are thankful that Ben has not had any more seizures since that day a year ago.  About 40% of people do not have any more seizures once starting medication.  We are so grateful that Ben is in that group.

And I'm glad that a day that started in a such a terrible, horrible, no good very bad way was able to end on a mostly positive note with a little boy who was doing much better.

One more picture - here he is back at home the next evening.  You'd think he would have been exhausted and would have crashed rather rapidly for the night.

You would be wrong.

Unforeseen Dangers

I'm blogging a lot about our children lately.  I guess that's because they're a big part of my day, and my emotion is often driven by what's going on with them.  Blogging is a way to process events and, sometimes, unburden myself from things that are swirling around in my mind, or share about our life to help people understand what it's like.

Last night, I was upstairs helping Rachel with something when I heard the worst kind of shriek from Ben, followed by scared crying.  If you're a parent, you probably (unfortunately) know that shriek - the "I hurt myself and it's still hurting, and I don't know what to do about it" panicky cry.  I ran down the stairs and found him in the living room with a block hanging off of his lip.

It was one of those big Megabloks, the chunky kind that are for younger children.  He likes taking 2 of the blocks and putting them together, then pulling them apart, or taking a stack that I've been putting together and taking ALL of them apart.  He sometimes uses them in the bathtub, too.

Neither James nor I had anticipated that there would be danger inherent in these blocks, since they're too large to get all the way into his mouth and become choking hazards.  But Ben likes to chew and bite on the blocks, which weakens them, and he had caused one of the pegs to get a crack around part of its base.  It opened enough to take in his lip, then clamped down.

I managed to get it off of his lip, but his lip was cut either from the block itself or the processing of removing it.  Blood ALL OVER, holy cow.  It took about an hour, during which we debated going to Urgent Care or seeing if we could stop the bleeding at home, before we got it to come to a stop.  The advice to put direct pressure on a lip wound for 10 minutes would not work with Ben, but I was able to do it in short spurts and also got him to suck on an Outshine popsicle, which helped the bleeding to slow down.  He also chewed and bit on a cool wet washcloth, which helped to slow things down and absorbed some of the copious amounts of blood.  And eventually, we left it alone and watched, and the blood clotted and he stopped actively bleeding.

YIKES.

Sometimes we just can't anticipate the things that he can turn into a danger for himself or others.  He got ahold of a glass from the kitchen counter while I was following him downstairs to the kitchen after a diaper change, then dropped it when he saw me, sending glass shards all across the kitchen floor.  He took an aluminum can out of the recycling bin last year and cut his thumb so badly that I took him to the ER because I couldn't get it to stop bleeding.  I now have a medical superglue to fix a cut at home if someone gets a cut like that happens again, but I couldn't put it on his lip.  He'll eat candles, deodorizer beads, pencil erasers, tips of marker pens and all sorts of things.

It's so hard to try to keep one step ahead of him, and sometimes we're not.  And then we feel bad when he hurts himself, but we also realize that there's only so much we can anticipate and try to protect him.  And we continue to pray that he'll develop a sense of safety so that his environment isn't so hazardous for him and we can one day take down baby gates and remove child-safety locks and stop having to lock all the interior doors of the house so that he doesn't get into our rooms and get into something he shouldn't.