Wednesday

This blog is my journal.  But sometimes that is hard.  This is the way I keep track the way I remember the important things, good or bad.  I have to admit, it is a bit therapeutic to write things down for me.  But sometimes it is just so darn difficult.  Like today. (I started writing this two days ago...it's taken me that long to finish it)  Sometimes I don't want to post about things because I have to re-live them.

But on the other hand, another reason I blog is for family and friends, far away.  Who want to help and be informed about our life.  And this is a lot easier of an outlet then calling each one of them and telling certain stories over and over.

Long story short, Wednesday when Noah woke up, and he had a prolonged seizure.  It lasted about an hour and fifteen minutes.  He got taken to the hospital in the ambulance again and was admitted to the hospital.  He is home now, on anti-seizure medication and doing better.

I have to say, I have seen my sister have a grand mal seizure.  My nephew has epilepsy too.  And while I never want to see either one of them have seizures again, I have to agree with one of the nurses we talked to Wednesday.  There is nothing worse than seeing your own child have a seizure.  It is completely different than seeing someone else (even someone else you love) go through one.

Feel free to stop reading now - the rest are all the long details.

~~~

Every Wednesday we have early school - it starts 10 minutes earlier, and gets out early.  By 7:30 Gage, Avery and Eli were up, dressed and hanging out in our room. Wade went in and woke up Noah.  Noah is our early riser, he usually up between 6-7.  He hardly ever sleeps past 7.  Around 7:45 Gage went in to wake up Noah again, and he told us he thought Noah threw up.  My hands were in the middle of fixing Avery's hair and since Noah himself hadn't told us he threw up, it could wait a few more minutes. (I know this sounds mean, but Noah is pretty good about being vocal about when he is sick and I hadn't heard a peep from him all morning.)  I got done with Avery and went in Noah's room.  Sure enough he was crouched on the floor and had some throw up next to him.  I asked him if he was okay - he wouldn't really look up or look at me, and I picked him up and put him on his bed.  He seemed a little stiff and couldn't really look at me.  Then he started having a seizure.

Noah told Wade Thrusday that he remembers throwing up and that he remembers me talking to him and putting him back on his bed.  I didn't think he had any memory of this.  I also took all his jammies off since he has always had a fever associated with a fever, and the first thing to do is to cool them down.

We figured he started around 8:03.  It was about 8:10 that we have him the first dose of Diazepam.  Since both Avery and Noah have prescriptions for this medication (and it cost a lot of money) we had all the needles dialed to Avery's dose - which is almost half of Noah's dose.  That way we could use it on Avery, or use two on Noah.

We waited a few minutes.

This seizure was different than his others for a couple different reasons.  We took his temperature a couple different times during the seizure and it was never high.  Noah has never had a seizure not associated with a fever.  This is not a good thing.

After waiting a little bit longer with no results we gave him the second dose of Diazepam.

Another different thing about this seizure was that his coloring remained good.  During all his other seizures his face turns a grey color and his lips always turn blue.  His oxygen levels go way off.  For some strange reason during this seizure - even with it's length his color was good.  That made me feel a little better. (but not really)

Looking back (hindsight is 20/20) we both agree that we waited too long.  (Although every Dr. we talked to at the hospital assured us that we didn't).  Noah's last seizure in March, was the only other time I gave him Diazepam.  I gave it to him, waited (what I thought was eternity) and then called 911. I really only waited a few minutes.  After reading more about Diazepam and how it works, I realized I needed to wait longer.  Sometimes it can take up to 15 minutes to work.  So I just kept telling Wade that the medicine would work and we should wait longer.

Plus, we've taken Noah to the Emergency Department 3 times before prior to (this seizure) for seizures.  All three times they just let him sleep, when he wakes up they give him some juice or an otter pop, he eats it and then they send us on our way.  Then we get an astronomical bill.  Plus, I think as an observer of this, you always think the back of your mind that they are going to stop at any moment and everything will be just fine.  That's not true.

10 minutes maybe went by.  That is a VERY long time.  He did seem to come a little bit out of it.  His hands relaxed, but his eyes stayed fixed to the right side.  He couldn't open his mouth and was making lots of noises with his tongue.

Another different thing about this seizure was that he lost bladder control.  At first I thought this was possibly because he had just woke up in the morning, but then I remembered that I did hear him wake up and go to the bathroom around 6:15.  That's not a good sign either.

Somewhere around 8:40 he threw up again.  Wade was really worried he would aspirate.
Then he got worse and his hands and legs clamped up again.

Wade gave him a preisthood blessing and we called 911.

I called our neighbor to come get the other 3 kids.  I had told Gage I would pay him to keep them in our room and feed them breakfast.  I am pretty sure they ate Doritos and had some milk while watching cartoons.  For some reason both times when our awesome neighbor shows up to take the kids I can never manage to find shoes, socks or coats of any one either.

The ambulance got here and I've never seen them work so fast.  I've called them three times for Noah now and once for Avery.  Usually they give them oxygen and we discuss what happened, and make a plan.  This time they freaked out and took him out of here so fast.  Before I could even find my shoes they had him in the ambulance.  They told me I couldn't ride in the back with him and I would have to ride up front.  Not that I think riding in the ambulance is fun, but riding in the FRONT of the ambulance is even worse.  Both prior times Noah has been in one I can sit next to him and hold his hand.

Riding in the front of the ambulance while they totally work on your child - for lack of a better word - totally sucks.

I have no idea how Wade can follow behind in the car.  But I am so thankful he can, because there is no possible way I ever could.

He was still seizing in the ambulance.  They gave him a dose of Versed.  It stopped the seizures and put him to sleep.  They started an IV.

By the time he stopped seizing in the ambulance, the total time was at least an hour, maybe closer to an hour and 15 minutes.  75 minutes too long.

At the ER we ended up having the same Dr. and nurse as we had in March, they even remembered us.  I really liked them last time, so that made me happy.  They immediately gave him a dose of Keppra through his IV.  This is an anti-seizure medication and they wanted him have it in his system before he woke up.

Noah slept pretty much all day.  His neurologist was in Seattle speaking at a meeting, but his associate was available and very helpful.  He was admitted to the children's hospital and they ordered another EEG (he just had one in March) and an MRI.

Then we just sat and watched him sleep.  All day long.  He did start to run a fever around 11:30, which the Peds Doc said was normal, his body just went through a seizure and after working that hard, sometimes an after-effect is a fever.  He woke up a little bit while they put the cords on for his EEG, but then he fell back asleep for that test.  Around 3:30 he woke up a little bit more when we were moving him down for the MRI, but then poor Noah, he just got put right back to sleep for the MRI.

It probably wasn't until 4:30 that he really woke up and then even a little bit longer for him to start talking to us and requesting food/drink/making sense.

Once he found out that the floor he was on had DVD's you could check out for your room he was set.  He was really happy when he found out they had the Star Wars DVDs.

The on call Peds Neurologist was able to come visit with us around dinner time.  He had read the results from the EEG and the MRI.  The EEG came back with similar results to his last one.  His MRI was normal too.  Basically he said that because of the length and lack of fever that Noah would need to stay on Keppra twice a day for two years and then we would reevaluate.  Since we are moving he should be seen soon in Salt Lake at Primary Children's by a peds neurologist and have follow up appointments every 6 months.  The only cause he could see was family history.  Darn it...that makes this my fault.

Noah and Wade stayed the night at the hospital and watched lots of movies.  Poor Wade got less than 3 hours of sleep.  Who can sleep through all that beeping, nursing coming in and out and on those hard fold out beds?  I came home, put everyone else to bed and then stayed up all night worrying because I wan't there to see what was going on.

Thursday morning when I got there Wade and Noah had walked down to the playroom. Noah was having some issues with balance and getting the left side of his body to work right. He could walk, not very straight, but straight enough that we could go home if we watched it.  So off we went and we were all finally home around 11:30.

So, as much as Wade and I both didn't want to start him on a daily medication, Keppra it is, twice a day for us, at least for a while.  And that is a much better option than seeing Noah go through this again.  My sister is on Keppra and my nephew (who has been seizure free over a year after his surgery!) is still on it as well.

The only major side effect is that it can affect their mood.  Great, Noah's the moody one out of the bunch anyway.  He is the one that we've struggled with the past few months.  Heavenly Father must be telling us that we REALLY need to learn patience and I guess even having 5 kids isn't the way to learn it.  Now we need to have one on a medication that makes him moody too.

Wednesday while watching Noah sleep I kept having totally mommy guilt over Tuesday.  Tuesday was a rough day for Noah.  He kept bouncing off the walls, running around the house, pestering everyone he could find.  Last week was a beautiful week here and we played at the park every single day.  This week it rained every day and we were cooped up in the house.  Tuesday afternoon Gage had his school musical and I packed a snack and a few items to keep everyone busy.  The program was only 40 minutes but Noah was the worst of the 3 little ones.  At one point he was banging his head on the metal chair.  My kids can sit through 3 hours of church and now how to behave.  So even though I had explained in the car prior to getting out what we were doing, how long it was and how I expected everyone to act, Noah got in trouble.  He said he was hungry and wanted to eat 4 granola bars.  He kept yelling that he was "starving!"  But he wouldn't consider eating the carrot sticks or drink the water.  So when I limited him on on the "treat" chocolate chip granola bars I didn't feel too guilty.  And when he continued to act up, I didn't feel too bad about taking away tv from him for the next two days.

My only redeeming thought about Tuesday was that I got the little two to bed a little early.  Wade and Gage were gone to the school musical night performance and so I got to spend a lot of time with him Tuesday night.  We read some books, cuddled and I rubbed his back (his favorite thing) for a long time.

Wednesday morning when he was going through all this, all I could see running through my head was how grumpy I had been with him the previous day.  I am so glad I spent that good quality time with him the night before.

I guess Wednesday night mid-movie marathon with Daddy, Noah looked over at Wade and said, "Daddy, I don't think I am supposed to be watching TV.  I think mom took it away from me."

Sweet kid.  I think I'd let him watch TV to the moon and back this week just to see him running around and happy.

The papers we came home from the hospital with say that he had a "Tonic-Clonic Seizure"  That is another word for grand mal.  I also have to write down how much we love his neurologist.  While he didn't get to round on us while we were at the hospital, he actually called our house Thursday night - at 8:45 - to check on Noah and ask us if we had any questions.  A Dr. called our house at 8:45 at night!  He talked to me and then to Wade and he talked to us and discussed things with us for 15 minutes! I am married to a Dr. I know how much their time is worth, they don't always get to spend time with their family, and they work a lot of hard hours.  That phone call to us meant a lot to me.

I never posted about his follow up EEG appointment he had at the beginning of the month. It was just a short meeting with the neurologist to discuss the "inconclusive" results we got back from the EEG.  He said that a lot of EEG's come back with those results.  That they aren't anything to worry about.  He said Noah looked healthy.  Unless he had a seizure without a fever, or he kept having febrile seizures after the age of 6, we were fine to never see him again.  Darn it, we qualified.

~~~

So now we are home.  Watching lots of tv, playing lots of legos and Wade even got Noah to take a short nap yesterday!  He was pretty mad that he couldn't go to preschool Friday.  His last day is next week and he knows they are doing all kinds of fun stuff getting ready for a "program"  Since he wasn't "sick" with a fever this time, we really don't need to hold him hostage inside.  But yesterday we took him in the car to pick up Gage from school.  He didn't even get out of the car but he was so tired when we got home - just from riding around - that he had Wade carry him in the house.  His little body has got to be exhausted from this whole ordeal.  Plus I just want to watch him these first couple days on his medication. It's our anniversary tomorrow - we canceled our date.  And probably won't be going as far as the beach Monday either.
Oh well.
There is always something fun we can come up to do at home.
And at least we aren't at the hospital!

Two funny stories that happened Wednesday:

Wade was leaving for work when Noah started to seize.  So he was wearing his scrubs.  He never took time to change his clothes, so him wearing scrubs confused people all day long.  The EMT people that showed up thought he was some sort of caregiver working in our home.  When new staff would walk in our room they would look at Wade and ask if he was done with what he was working on.  He had to keep reminding people that he was the DAD.

Noah woke up when they were marking and putting all the wires on his head for the EEG.  He wasn't really talking alot at this point.  He looked up at the techs, looked at us, looked at his arm, pointed to the IV and said, "WHAT THE HECK IS THAT???"

That gave us all a good laugh.
Funny Noah.
It's always good to have him make us laugh.