Juston Update

I'm just going to say right now, this post is very rambled and all over the place.  Sorry.

Well, I left off with us waiting around in the ER.  Quite a bit has changed since then.  When we were first in the ER they said the initial tests (CT scan, urine test, and blood work) all came back normal.  So we would be referred to a Neurologist and Internal Medicine doctor that we would need to see in the morning.  I was happy about that, but VERY nervous.  Once everything got processed it was about 4 am.  So they told us we would be staying the night and just having the doctors come to us in the morning.  I thought we would be staying until the next afternoon - not too bad.  WRONG.

We stayed in the ER until about 7:30 or 8 the next morning.  That was really hard for me.  I had taken half a Unisom right before the seizure happened (for my morning sickness) so I was having a hard time staying awake and sitting in those really uncomfortable chairs.  Thankfully Juston slept most of the night.

It was really nice to get up to the room into better chairs (and eventually a pullout chair/bed).  We talked to the neurologist just a little while after we got up there.  He explained a lot to us and did an exam on Juston.  He seemed pretty confident we would just need a few tests and would be able to go home later that day.  Again, NOPE.  The hospital was SO SLOW.  But okay, I need to just back up and tell what happened.

The doctors came in and talked to us.  We found out Juston wouldn't be allowed to drive or bathe on his own for 3 months. They also told us the tests looked normal but he would need an MRI and EEG to really see what was happening.  We sat around most of the day waiting and waiting for those tests.  The MRI finally got done around 4:45.  The EEG guy came in at the same time so it didn't get done.  So, we had to stay the night.  We basically sat around the whole day and didn't get a lot of answers.  There was part of me that was happy to be staying because I was so afraid of going home and having this happen again.

Sidenote (see, I told you this was all over the place), we had visits from my parents, Juston's parents (who both brought Jackson to see us and we were SO grateful.  I missed him so much during all of this), Nitosha, and Darci and Devin.  It was nice to have the visitors because we got really bored.

That night was an interesting one.  We had a nurse come in around 8 to take his vitals and check everything.  They told us that unless we needed them they would only come in at 12 and 4 to check on us.  Shortly after 8 I finally fell asleep (I had maybe slept an hour total throughout the day).  Basically, I was up for probably 38 hours before I fell asleep.  I was tired.  I slept so deep until they came in at 4 to check on us.  I probably only woke up because he needed to turn on the light to draw blood (also, why couldn't they wait until 8 to draw his blood?!).  After that initial exhaustion sleep I had a really hard time sleeping.  First, Juston was in a lot of pain from his back and tongue.  He chomped his tongue really bad during the seizure.  The thrashing and everything made his muscles in his back hurt really bad also.  It was hard to watch him be in so much pain.  Finally, I told him he should ask for some pain medicine and something for his tongue.  Thankfully they were able to give him something (I don't remember what) that helped.  I was so glad to see the pain subside.

We tried to go back to sleep but I had a really hard time.  I suddenly couldn't stop reliving everything that happened.  Every time I closed my eyes I would picture it.  Needless to say, I had a hard time.  I finally broke down crying and just clung to Juston and told him I was so happy he was alive and with me.  I finally said a few very fervent prayers asking for some peace and help sleeping.  I was able to sleep after a little while for about two more hours.  It was good to see the morning and know we would be going home that day.

When the nurse came in she said we would be first to get an EEG that day.  Woo hoo.  Not.  We didn't get the EEG until about 2 pm.  In that time we saw both doctors again.  We found out the MRI came back normal but did show some sinusitus.  They put him on a higher antibiotic than what he had been on to help that.  But basically the MRI didn't show any tumors or any abnormalities we really needed to be worried about for future seizures.  They were both upset we hadn't had the EEG yet and went to find out why.  The neurologist told us to have him paged when the test was being done so he could read the results that day.  He said as long as it came back normal Juston wouldn't have to go on any medicines and we would just say this was a one time thing.

When he had the EEG the guy doing the test (I can't think of his title at the moment) asked us a lot of questions.  He explained that if you've had a seizure before (which Juston did at age 2 from a fever) then your chances of recurrence are a lot higher.  I found that interesting because up to that point everyone had kind of blown off the fact that he had one as a kid.  We asked him if the seizure could have been caused from the sinus infection since everything was coming back normal.  He said it was likely especially if the infection had been growing a while (which we think it had been).  We heard him call the neurologist and tell him the test looked good to him.  So, we chalked that up to mean the test looked great and it was probably from the sinus infection.  I was very happy about that.  I knew we needed to be very careful about Juston getting better (or sick in the future).  I took comfort knowing that once he was better we were out of the woods (hopefully).  We were able to go home a few hours after that medication (minus the antibiotic) free.  Yay.

That night Juston's parents brought us dinner and Jackson (and my mom dropped off dinner for today).  We mostly just ate, took showers, and went to bed.  We were tired.  I again had a hard time sleeping.  Every single time Juston moved, breathed weird, twitched, or anything I panicked.  I kept thinking he was going to have another seizure.  Jackson woke up at 3, cried for a little, and went back to sleep.  He also woke up at 5, drank some milk, and went back to bed.  I was able to sleep a little bit in there but not much.  At 6 the neurologist called to tell us the official EEG results.  Unfortunately, there were some abnormalities and Juston needed to go on medication.  He said the medication should fix the abnormalities.

We got up with Jackson around 7:30.  We ate breakfast, hung out for a little while, and then got ready for the day.  We also gave Jackson a haircut and Swarley a bath.  Getting ready took a lot out of Juston.   He was so tired after that.  When I put Jackson down for a nap at about 10 he laid down and was almost instantly asleep.  I knew I needed to go get the medicine but couldn't leave Juston and Jackson alone.  I feel so weird/bad calling for basically a babysitter for my husband.  Oh well.  I would rather be safe than sorry at the moment.

I asked the pharmacist what side effects we should expect.  He said Juston would be drowsy, slow, might have blurred vision, and dizziness.  He did say the side effects should only last the first 3-5 days until his body is more used to the medicine.  I am really hopeful for that because Juston seems so miserable on the drugs.  We went to Sacrament meeting and I could tell he was struggling.  I kept offering to leave early but he wanted to stay for the whole meeting.  After a few people came up to ask how he was doing and I mostly had to talk for him.  He could barely carry on a conversation with anyone.

We are all really tired now.  I am really hoping I can sleep better tonight.  I am also hoping that Juston's body will adapt to this medication quickly.  We will be calling our internal medicine doctor to see if we can get an earlier appointment (we have one for the 22nd).  I am anxious to find out more about the EEG and what the future holds for seizures/health.  I think Juston is having a hard time wrapping his  mind around all of this.  He just keeps saying it feels so weird to be so weak, on medicine, etc from something he can't even remember.  I am still really paranoid.  However, I am starting to find more peace with everything.  We both had blessings the night all of this happened.  I honestly don't remember a lot from mine.  I only really remember that Juston's said he wouldn't have any lingering health problems from this.  Also, that Heavenly Father is aware of us and our struggles.  I take HUGE comfort in that.  We are struggling to know how we will be able to pay the medical bills along with our regular bills (Juston almost didn't ask for pain medicine because he was afraid of how we would pay for it.  I told him about this part of his blessing and that it would be okay).  We are struggling to know how to create our new normal with Juston needing more care. There are a lot of things we are really uncertain about.  However, I do know Heavenly Father is aware of us.  He will provide a way for all of these new challenges to be overcome.  I know it won't be easy.  We can do this though.  We will get through this.

We are so so very grateful for everyone that has helped us.  I can't even begin to describe the gratitude I feel for our parents and Nitosha and Kyle.  They saved our lives.  I am also so grateful for everyone that came to visit, brought us food or other things we needed, called/texted us, and messaged us through Facebook.  We can also feel all of the prayers on our behalf.  I never understood when people said that.  Now I get it.  I can feel the peace and comfort from all of them.  Thank you everyone for your love, concern, and help.  We really couldn't have done this or be doing this on our own.  THANK YOU!!!