MRI

I haven't been able to update much here lately, it's been busy as usual.  Jacob is going through a bunch of medical testing right now to help us determine what the cause of his behavior changes since January might be.     We are seeing a LOT of SIBs (self-injurious behaviors) and he has just seemed very moody and down.

Today we went to the hospital (5:45 am check in!) for an MRI his neurologist ordered.  He wants to make sure nothing in Jacob's sinuses is bothering him, as well as a few other things.  Chris stayed home with the girls and I took Jacob to the hospital along with our awesome caregiver Amanda.  She was willing to meet me at home at 5 am to bring him in!


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We checked in and waited until about 6:30 when they brought Jacob back to the prep area.  The child life specialist got a very helpful schedule ready for him with a list of everything that was supposed to happen.  We had a wonderful nurse who made sure she followed the list exactly and I think it was very reassuring to him to be able to cross each thing off and understand what was next.  

We decided against using Versed before the procedure to relax him.  He usually tolerates shots well and has fought against Versed in the past.  So they got his bed set to go and he got a ride through the hospital lobby and out a side hallway...we got to go outside to an MRI trailer in the parking lot.   He smirked during this even though he was nervous...it was pretty fun!

It looks like you are in a space ship in front of the MRI trailer!  They have it all tented in black and then the nurse pulled his bed onto a lift and it took him up to a big door in the trailer.  Pretty cool!  He was looking forward to his "up, up, up elevator ride!" all morning.

When he got to the top I saw him checking out everything in the trailer and I think that's when he started to get really nervous.  Can't say I blame him.

Amanda met him on the other side and showed him his checklist again.  He was supposed to get a "silly IV," "take a nappie" and then get some "blue popsicles" and go home.

He got off his bed and was looking very unsure here.  They wanted him to get onto the MRI bed and it took us a bit to get him on it.  He started saying "no shot."

Unfortunately this is the frustrating part of our story.  The anesthesiologist wouldn't listen to the fact that the prep nurse had checked his veins and had TWO great spots, one on each arm (inside of his elbow area).  She had numbed them both with EMLA cream so that the doctor would have both choices.  She decided to go for his hand instead...not numbed, and not what he was expecting.  Amanda, our caregiver, is also a nurse.  She was steaming after this because she was so frustrated with how the anesthesiologist handled it!

This was the result.  He jumped, pulled it out, and she had to try again.  He was super scared and crying...look at that face.  It was killing both me and Amanda.  Finally the nurse on the left of the picture stepped in to help and got the IV into Jacob's right arm.  No problem.  Sigh.

Because it was numb, Jacob was much calmer about doing it there.  

10 seconds later...out!  Thank goodness.  

The scan lasted about 45 minutes.  He had a wonderful nurse in the recovery area.  Here I am with him before he woke up.  He slept quite a bit and so finally we started talking about his blue popsicles and I put one in front of him. His eyes opened and he wanted some right away.  He was so sweet!  He woke up slowly and without any fussing, just pulling the covers over his head and shivering a bit.  He got warm blankets and as much Popsicle as he wanted.  I have a funny video of him trying to eat it, I'll try to load that one later.  

About 20 minutes after he woke up, he was on his way to the car!  He did start crying at the car and asking about "shot" and "elevator."  We weren't sure if he remembered and was upset about it...or if h. didn't remember and was feeling like we didn't do everything we'd promised him we would!  He cried and kicked the back of my seat all the way home.  Thankfully Amanda was there and did her best to calm him while I drove.

At home we had about 45 minutes more of crankiness, and then he calmed down.  He has said "5 more seconds!" several times to me today and that makes me so sad.  I kept saying that to him while they were trying the IV in his hand because I thought they'd get it in and he'd feel the effects almost instantly.  Now he thinks we were lying to him.   I am sure that will come up NEXT time he needs an IV, unfortunately.

I am praying we get some good information from the scan...we should get results on Monday.  I am just so proud of my brave boy.  And very thankful for all the people who DID work hard to make it a good day for him today.  :)

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I'm adding this later...a few of the pictures and video we took the day before when we visited the hospital.  We wanted to show Jacob where he'd be so it would be less scary the next day.  

 Checking in...or pretending to anyway!

Looking at the prep area.  He wanted to get up in that bed and we had to tell him no.  Interestingly, the next day when it was the real deal, he did NOT want to get in the bed!

Giggling on the way home.  I think he was relieved nothing had happened that day!  In this picture you can see a little of the bruising on the left side of his face...by his chin and forehead.  This is all from hitting himself repeatedly.  :(