Tuesday, March 4, 2014

We made it through the day!

The boys are in bed and today is officially over, just need to type my blog, clean up our house and GO TO BED!   Today was exhausting.  I didn't nap yesterday and for some reason thought we would be back in time for me to nap this afternoon which obviously didn't happen so I am beyond tired but glad we got today over with.

Surprisingly we got to Froedtert on time for my 9:15 radiation, with snow that came overnight the roads were really slow and we had to a different route than we planned but we still got there on time.  While I was back in radiation, Jamie and Owen stayed in the waiting room and Jamie gave Owen his Valium pill.  We have never given him one of these before so we weren't sure exactly what to expect but if was perfect.  It allowed us to make the walk over to Children's and get all situated in the MRI waiting area without a problem.  Owen was with it but kind of out of it and spacey, it was perfect.  We were hopeful that he would maybe do the MRI awake.  Well then we ended up having to wait for a long time.  Our MRI was at 10am and I am guessing some of the early people had problems with traffic and so they were backed up.  Soon it was 10:30 and we could see the effects of the Valium wearing off.  We were starting to get nervous.  Then the doctor came in to talk to us and Owen about the MRI.  The doctor started explaining to Owen how the test would work.  That he would have to lay very still, not move at all, that they would be showing him photos of things on a screen inside the machine and that he should just think of the names of these items in his head but not say them out loud and not move.  He told him how they would read him The Cat in The Hat but they would read a page of two and then he would hear funny noises and then it would go back to the book.  It was while this doctor was talking that Owen realized something was going on, that we were here for HIM and he started to get scared and mad.  The doctor quickly saw that Owen would not be cooperating for the awake portion and suggested we just do the sedated MRI.  We were fine with this, we could also see there was NO way Owen was going to do this awake and aware of what was going on and so we agreed, just proceed with the sedated MRI.

Then we had to wait for the anesthesiologist to come and talk with us.  She told us that they needed to do a stronger sedative with Owen.  Usually for MRIs they just put the kids out slightly, just enough to get them through the MRI but it's  a really like anesthesia.  Well with Owen's MRI they would actually be in there with him moving his arms, legs, fingers, etc.  Even though he wasn't actually making the movements himself, they can still tell which parts of his brain are working when someone else moves the parts for him.  With light anesthesia he would have started moving when they moved his body and woken up so they needed him to be in a deeper sleep.  So finally they were ready to take him back.  They only allowed ONE parent to go back, so I went.  As soon as he saw the bed he clung to me.  He knew something was up.  Then they took out the blue rubber band they tie around your arm to start an IV or draw blood and he fought it with everything he had.  It was so bad, I HATE this stuff.  We had MRIs when he was younger and that was hard too but when they are older and aware and truly scared it just plain sucks.  He is looking at you to do something, to help him, to save him and you can't.  I am so tired and beat down all I could do was help hold him and sob myself while trying to get words out. Trying to tell him that I was there for him, that I loved him, that he was brave.. but mostly I just cried and touched his face while the team of people pinned him down while getting the IV started.  I have to say, the team of people that worked with Owen today was AMAZING!  When I was sobbing and unable to compose myself one of the women that was helping pin him down was talking to him, telling him it would be okay.  I felt so stupid that I wasn't able to do this for him.  They were able to get the IV started in his foot on the first try and literally within 3 seconds he was out.  Then they wheeled him into the MRI room.  It's just so sad to see his tiny body on that big bed, he looks so small and innocent and that machine is so big.  Man, now I am crying again.  

Seriously, he goes through so much.  Everything is harder for him on a daily basis, talking, running, climbing, writing playing and then he has to deal with all this too.  He is such a sweetheart and tries so hard to be brave and strong but this is just so much for a little kid.  I know these tests are for the best, but really they may lead to brain surgery would will be so hard I can't even think about it right now.  I walked back into the waiting room sobbing and Jamie knew exactly what I had just been through and just hugged me.  We sat in silence crying for a few minutes.  We both said a few words questioning why we were having to go through SO much crap lately and then we pulled ourselves together.  It was nearly noon and neither of us had eaten yet so we took turns eating lunch in the cafeteria while the other stayed in the waiting room.  While I was eating my pizza in the cafeteria, Jamie and I were texting each other about how much we loved one another.  It's so weird how these terrible times make us so much closer.  We are not a very lovey dovey type couple but when we go through days like these, we are so close.  It's hard to explain but going through these tough times makes me realize just how amazing Jamie is and how perfect we are for each other.  I couldn't imagine going through these type of days without Jamie by my side.  He always knows when to hug, when to talk and when to make a really awkward comment to make me laugh.  We were definitely brought together for a reason and days like today make that so crystal clear to me.

After Owen had been back there about an hour the anesthesiologist came out to say it wasn't going the greatest.  Owen is congested, we knew this and in his deep sleep he was having a hard time breathing.  He was totally safe but being so congested was causing him to move ever so slightly while he was breathing so they were having a hard time getting any images.  :(  She said they had just started to get a few and hopefully they continued getting them so we didn't have to do this again.  Seriously, if we had to do this again, I would QUIT!   BUT they got it done, well at least what they could get done during the sedation portion.  They would have liked to get some speech during it and just having him look at photos and process in his head what he was seeing so they could see what his brain was doing during that portion but they said usually kids need to be 7 or older to really cooperate with that and be awake during the MRI.  So then we were finally able to join him in the recovery room.  

 Poor baby was still out cold and we let him sleep as long as he wanted.  He slept for probably another 30 minutes in the recovery room and then woke up.
 He was really out of it and could hardly open his eyes but was able to eat and drink a little so we got to go home pretty quickly.  Owen was really excited to be home and Owen, Jacob and I snuggled on the couch and watched the movie Frozen.  I think our household may hold the record for the most times this movie has been watched since it was available for purchase on the Apple TV.  Even Jacob knows what parts are coming next.  I have to laugh because Owen has two favorite parts to the movie.  The first is at the very beginning when they are sawing through the ice, I like this part too, the song is really catchy.  But his second favorite part is when Elsa builds the castle of ice and she lets her hair down.  When she lets her hair down specifically is his favorite, it's the long braid that drapes over her shoulder.  So random but he will rewind and re-watch that part over and over.  It made me laugh, especially since it's kind of ironic.  I am mourning my hair loss and Owen keeps playing this 2 second portion of a cartoon where a girl lets down her long perfect blonde hair.  So funny!
Jamie snapped a photo of us cuddled on the couch.  I am sitting close to Owen so Jacob HAD to be sure to sit right ON my lap so that he was closer to me that Owen.  Jamie popped us some popcorn on the stove and we all snuggled for almost the entire movie.

I was shocked that Owen totally perked up and was pretty much back to his normal self by dinner.  I was SO happy about that.  Special thanks to Katie for dinner.  Jamie LOVED the ribs!  So did I but literally if you could have seen the look on Jamie's face when he saw that it was ribs, it was pretty funny how excited he was!  So thank you!  Also, thanks to Carrie for dinner last night, the casserole was amazing and the boys LOVED the cake pops! 

So we will hopefully have results of Owen's MRI within the next few weeks as well as their recommendations as to whether or not we should proceed with the brain surgery for him.  I will definitely keep everyone posted when we hear, in the mean time Owen is looking forward to pajama day at school tomorrow.  He already has his pjs picked out.  He is OBSESSED with Batman lego but only likes the Villians so he is wearing his pajamas that have the Joker, Two Face and The Penguin on them.  Boys.  :)

I have a full day at Froedtert tomorrow myself.  Will be there from like 10 - 2.  Should learn more about my potential for starting chemo.  I am scared/anxious/excited for that.  :(  I guess it will be nice to have an idea of what our next year will look like and start planning for that.
I was proud to wear my new bracelet today.  The bottom one I wear everyday, it's from Owen's physical therapist Pat and it never leaves my wrist.  It says strength on one side and courage on the other.  The top bracelet just came in the mail yesterday from Emily.  She is a friend of a friend whom I have never met but she sent me this amazing bracelet with the words "I got this" engraved.  LOVE it!  Thank you SO much Emily, it's perfect! 

Thanks to EVERYONE who thought about us today and prayed for Owen.  We GREATLY appreciate it.  Days like today are exhausting but knowing you have so much support and love makes them easier.  Hoping to get a good nights sleep tonight and wake up refreshed and ready to take on tomorrow!  If only I could snap my fingers and have our dishes from dinner be magically rinsed and put in the dishwasher.... darn it.


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