A Scary New Chapter for Jake

By now, many of you are aware that Jacob had a possible petite mal seizure in class.  I sat down to write it up for his doctor and thought that I would post it here.  I think I’ve reached the end of how many times I can say this out loud.  It is terrifying every time I re-live it, but want you all to be able to hear the story.  If you want to hear the story.  If you don’t want to read it, read the next paragraph and then be done.  You will be glad you did!

Before I go into all the details, I have a bit more story.  I have been helping out in Jake’s classroom every day at 9:o0, during some of their independent table work.   I had decided to not go on Wednesday morning because I had just had a cortisone shot in my foot and I felt pretty terrible.  However, just a few minutes before 9:00, I suddenly found myself in the car, driving to school.  It was almost as if I didn’t have a choice as to what I was doing.  I firmly and totally believe that God wanted me to be with Jacob for what was to come.  There is no other explanation!

This is why He wanted me there.

On October 29th, around 9:15 in the morning, Jacob had what appeared to be some kind of stroke or seizure.

I was sitting at the head of his table, he was to my right.  I was turned to my left, helping one of his classmates when I saw out of the corner of my eye that he went very still.  I turned to him to tell him to start working on his project.

He had a panicked look on his face and after a few seconds, his face went totally slack.  His eyes remained opened.  His jaw fell open, his tongue was pulled back into his mouth, and there was a tremendous amount of saliva pooled in the bottom of his mouth.

I thought he might be about to throw up, so I picked him up and got to the bathroom as quickly as I could.  In the 20 feet from the table to the bathroom, he went totally limp in my arms.  I talked to him and tried to get his attention.  His eyes were still open, but unfocused, the pupils were dilated very widely, and he wasn’t able to meet my eyes.

We were causing a huge scene in his classroom, so I brought him to the office, which is just outside of his classroom.  He started to make moaning sounds, but was unable to speak.  His eyes re-focused and he was able to look into my eyes, but he looked very dazed.  I asked him what his name was.  He was able to open his mouth, but his speech was severely impacted.  His mouth looked as if he had a mouthful of novacaine.  He was able to say his name, but it came out slowly and barely intelligible, the word lasting about three seconds.

He knew who I was and within about a minute, his speech improved dramatically.  In another minute, he regained control of his muscles and was able to sit up by himself, but still leaned back on my shoulder.

His speech remained slightly off for another two minutes, but improved with every word.

The paramedics arrived within another five minutes.  They asked him to hold up his arms, resist pressure on his arms and legs, to put out his tongue and move it from side to side.  He was able to follow all of those instructions with no problems.  The only remaining symptom was a bad headache in the center of his forehead.

Then, he got very emotional and was crying, mostly because he thought that the paramedics were going to give him a shot.  He hates needles!  The paramedics loaded us into the ambulance.  Jacob was still content to rest on me and didn’t fight being strapped in.  Under normal circumstances, he would have resisted this process.

We got to the hospital and he was still somewhat disoriented and very cranky.  Within about an hour, he seemed to come out of his confusion, demanded his lunch, and scarfed it down within a few minutes.  I normally have to fight with him to eat every bite.  Mealtimes can take up to an hour, so it was very unusual for him to eat so quickly.  After he ate, he became the funny and sweet little boy that he is.  His personality totally returned and by the time they released us two hours after our arrival, he was hopping up and down in front of the ER doors.

The initial episode lasted about a minute, with slurring of speech for about four minutes afterwards.  His confusion and crankiness lasted about an hour after that.  At the end of another half an hour, he was totally back to himself.

He has no memory of a few things that happened prior to his seizure, nor any part of his seizure.  He doesn’t remember the ambulance ride.  The only thing he can tell me is that he remembers looking at me and then feeling like he “had glue in his mouth”.  I can only imagine that is how he felt when his mouth wouldn’t work.  I am thankful that he doesn’t remember any more than that.

I know that for sure, two other times, he had what is called an “absent seizure”.  He just kind of isn’t there for a few seconds, has no memory that he was gone, and doesn’t remember anything that happened while he was out.  He snaps back just fine, but headaches seem to precede and follow these episodes.

Other than these episodes, he has been our little Jake.  He has been cranky, funny, sweet, active, and seems to be himself.

We are obviously very concerned and are scheduled to see a pediatric neurologist on Friday.  I am anxious to get some answers.  There are a lot of other behaviors that Jake has that really fit with a mild form of epilepsy.  I hate to say that I hope that he has epilepsy, but it would be so much better than the alternatives.  And, it can be fixed with medication and frequently, children seem to outgrow it.

I have nailed my internet searching fingers to my desk and have not researched one single thing about his symptoms.  I have spoken to two parents with children who have epilepsy and their stories have matched mine and been very encouraging.  I am thankful that other people know this journey, this fear, this watchfulness that I can’t shake.

I am worried, tired, anxious, and have been thrown into a new level of fear that I didn’t know existed.  I can’t help but wake up a few times in the night to check on him.  He is sick of me asking him if he feels okay and has taken to yelling, “I’m fiiiiiiine!” almost every time I say his name.

Whatever our journey, I know we will get through it.

We could use your prayers for strength, peace, answers, and the ability to deal with whatever is coming.

On Facebook, I said that I didn’t want any medical advice.  It was funny to a lot of people, but I really do mean it.  So far, everyone has respected my wishes and I am so grateful for that.  In case you are wondering why I asked for no medical advice, I will tell you the simple story of someone telling me that coffee enemas greatly reduce the side effects of chemotherapy and leave the rest of the thousands of pieces of advice to your imagination.

I will keep everyone updated here on our progress and journey.

I am thankful for so much love and support!

Just in case your heart will feel a little better seeing Jake’s happy little face, here he is from our trip to the Sacramento Zoo on Saturday:

IMG_4278

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2 Responses to A Scary New Chapter for Jake

  1. Catherine Jacobson says:

    someone suggested warm oil enemas would help me have another baby 🙂

  2. kiermarie says:

    Oh Mary! My heart hurts for you. What a scary, scary time for you. I am so glad you were able to be there, but I know it must have been beyond difficult for you! I have been and will continue to pray for peace. Love you so very much!

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