Home from Duke!

We got home this afternoon and are so thankful to be home.  While we see pictures of people vacationing in the little mountain town where we get to live, it makes us even more homesick!  We were happy to climb that mountain and hit the fresh, cool air.

We left Wednesday morning at about 7:00.  We got to Durham and waited for another call.  The one we had earlier said they would call back at 1:00.  Then the 1:00 call said they would call back at 3:00.  We got a call and went on to the hospital admissions where Andrew checked in, and we waited.  And waited.  The man in admissions said they did not have a bed for Andrew, when the caller said his bed was ready.  We finally got up to the 4th floor late that afternoon.  He was hooked up and ready to go by 6:00 or so.  And then we waited again.

Thursday came and went.  Andrew had some tingling in his hands, and he was already getting a little closed in - the room was very small, and he had to stay in bed.  He studied Chemistry.  We had a word puzzle match.  He did not sleep.  He stayed up very late Tuesday night and slept only a couple of hours on Wednesday.  He drank a lot of caffeine.  One resident frowned on that, but then I realized she frowned a lot anyway.

We had instructions on what to do.  We hit the button (I called it the Jeopardy button) if he had a seizure.  And they would run in to help.  He had an IV sticking out of his forearm, in case emergency meds were needed.

Friday came and went.  He had more tingling.  We know some people go the EMU (epilepsy monitoring unit) and never have seizures.  He was off all of his meds, so he had to stay in the bed.  We did not talk among ourselves, but we were feeling like he may not have one.  Andrew was feeling very closed in.

On Friday evening, on the way back to the hotel, I cried.  I was so disappointed that the trip seemed to be in vain, unless we wanted to just stay and stay and stay.  But then I remembered that sometimes we have to just claim victory before we see it.  So I asked people on Facebook and through text messages to pray at 6:00 p.m.  Pete was on the phone with me and had his hands on Andrew and prayed.  And I slept better.

The next morning I got a text from Andrew that he'd had a seizure at 1:40 in the morning.  It was bad, Pete said.  Then the doctor came in and said they needed five seizures.  We felt a little dejected again.

So we asked people to pray again.

And here they came.  The next one was with me.  Andrew started taking very deep breaths and went so fast into a terrible seizure.  I hit the button and yelled for help.  As several nurses responded and worked on him with oxygen and suction, I held his big toe and prayed.  I prayed out loud that God would help him.  And He did.  Everything calmed down.

Pete and Sam came back not long after.  I took Sam to get a sub at Subway downstairs in the hospital, and Pete called me while we were in line to tell me he'd had another.  We rushed back upstairs as he was coming out of it.  So that was three.

Andrew had tons of leads on his head.  They were there to record information during a seizure.  He was also videotaped by two cameras pointed straight at the bed.  During those seizures, and because the leads had been on since Wednesday, some came off.

We were concerned that the information would not be complete without all of the leads, but someone told Pete that the one person in the hospital who could fix them over the weekend was "busy".  So that was our first concern.  Andrew did all he was supposed to do.  We prayed for seizures.  He had them, but they could not keep the equipment fixed?  We became very frustrated.

Someone did come and fix the leads, but in the six seizures he had, some information was not recorded.  And he was in the EMU.  The neurologist told me that the ones they got fully were enough.  And the others confirmed what the good recorded ones said.  But we still were not happy that those other seizures may have been in vain.

All in all, he had six awful, horrible seizures in 24 hours.  Sam and I had gotten in the car to leave, and Pete called again.  So we ran back in to check on him.  He had another one soon after.  And the last one was on Saturday night around 11:30 pm.  By that point, they had already started him back on one of his meds.  Pete insisted they restart all of them.  He did not think Andrew could take much more.

One nurse said every seizure he had was like running a marathon on his body.  And he ran six marathons in 24 hours.

So on Sunday morning, the neurologist came by and told me he could send Andrew home with a fourth seizure med, or he could stay another day.

Andrew was still hooked up to the machines, but he was so out of it.  He would not wake up for anything.  He ate nothing on Saturday or Sunday.  He barely drank.  We could only wake him up enough to take his seizure meds.

So I decided he needed to stay one more day.  I was afraid to take him home.  And Pete agreed.  Andrew's shoulder or arm had been injured in the third seizure.  Andrew's back had started to hurt so badly that he was almost in tears.  When he was out of it, he asked if I could go to Boone Drug and get some aspirin or something.  He never takes pain meds.  So Pete had rolled him onto his stomach to try to relieve the back pain.  And he started having a seizure, so they had to roll him back.

After that seizure, he was crying out in pain.  We could not touch his right hand or arm or even his finger tip.  He kept pointing to his wrist and then his shoulder.  They came in to x-ray but only had orders for his wrist.  He continued to writhe in pain, and so we asked for the shoulder x-ray (that we had asked for in the beginning).  X-ray came again and did his arm.  And Andrew continued to cry with pain.  We finally had let the side of the bed down and somehow that helped.

They gave him pain meds in an IV.  He slept.  So when the doctor came in on Sunday morning, I told him that Andrew was in severe pain and asked if someone could possibly check his shoulder.  He ordered the shoulder x-ray.  Hours later, another doctor we had not seen before said apparently Andrew's shoulder was dislocated.  We waited a long time for anyone to come.  And I was gone by then.  And am glad I was.

Pete said it was awful.  Andrew was so out of it but came to as they put a big needle in his shoulder and moved it around.  And then a man and woman pulled and tugged his shoulder back into place - we hope.  No wonder he moaned in pain.

This morning, the same neurologist said we would follow up with ortho.  He said that dislocated shoulders were common with the type of seizure Andrew has.  So I wondered why when I wondered out loud a few times if his shoulder could be dislocated, why did they not check it?

There are some things we learned while in the EMU.

1)  We thought Andrew would be checked on much more frequently than he was.  So it was a good thing we both were there and could switch off.  Sometimes our backs hurt from leaning over the bed for long periods of time making sure Andrew did not pull off his leads - which was our job.  We were the only ones who seemed concerned about how much he did or did not eat or drink.  At times he was monitored, and then he just was not.

2)  We thought we would be told what to do to help Andrew.  And we were told some things.  But we should have let the bed down flat if at all possible during a seizure to minimize the wear on his back.  While we did not want him to choke, it would have helped to have him down and turn him on his side.

3)   We should have thrown a fit about his shoulder.  We knew something was wrong if he was in that much pain.  The nurses looked helpless and told him to try to "breathe through it" ~ and that was just not possible.  I saw my dad writhe in pain with his shoulder and I should have pushed harder.

4)  We should have written down specific questions to ask the doctor.  Communication was not good, which was probably why the leads were not fixed in a timely manner and his shoulder hurt way too long.

If we had known how wearing it would really be, I don't know if any of us would have gone!  But Andrew literally had to suffer to get the information to see if he has other options, other than more medication.  So we will be thankful they got the info and super duper thankful he is done and okay.

As I write this, Andrew finally woke up.  He had a long bath.  It takes a long time to get the glue out of your hair!  Pete and I both worked on his hair for a long time.  He is resting on the couch.

I am trying to email his professors and work supervisor, but he cannot remember his password yet!  So we will watch him closely the next few days and get his shoulder checked and wait for the next step at Duke.  They mentioned a PET scan - and I am not sure why.  He has never had one of those.

Thanks to all of you who pray.  We know others stay much longer in the hospital and have different outcomes.  So we are so thankful for what ours was.  But it was still rough, and we are still thankful God was there every minute.  He really showed Himself through those specifically answered prayers!  We pray that speaks to someone and shows who He is!

We prayed God would be glorified in all of this, and He has been!

My new favorite song is "Salt & Light" by Lauren Daigle.  Here are the words.  I love the part where He "redeemed my story" and "let my life be a song revealing who You are" ~ gives me chills!

"Salt & Light"  Lauren Daigle

Oh the beauty of the King
You make righteous those who seek
You have written and redeemed my story

Let my eyes see Your kingdom shine all around
Let my heart overflow with passion for Your name
Let my life be a song, revealing who You are
For You are salt and light

Oh the love that set me free
You bring hope to those in need
You have written and redeemed my story

Let my eyes see Your kingdom shine all around
Let my heart overflow with passion for Your name
Let my life be a song, revealing who You are

For You are salt and light
You are love's great height
You are deep and wide
A consuming fire

You are salt and light
You are love's great height
You are deep and wide
A consuming fire

Let my eyes see Your kingdom shine all around
Let my heart overflow with passion for Your name
Let my life be a song, revealing who You are
For You are salt and light
You are salt and light
For You are salt and light
For You are salt and light