Thursday, March 8, 2012

Bingo!

Bingo night at the hospital is usually Tuesdays.  Ty participated the other night but he was in isolation so he wasn't allowed to go to the playroom to play.  In those cases, the kids use a walkie talkie to participate and the Child Life volunteers come by with a cart full of small prizes to choose from when it's over.  I guess that wasn't the same to him. 

Ty was taken off of isolation today because he is doing better, so he really, really wanted to play Bingo in the toy room tonight.  I told him over and over again, "Tuesday is Bingo night... today is Thursday... Thursday is slime night... YAY!  We can make SLIME :)"  but he would not give up.  In fact, he put on such a show - not a bratty show but a genuinely sad puppy show - that he had all the women swooning and bending over backwards for him as he dramatically nuzzled into my shoulder with real, theatrical tears.

Needless to say, Ty had his own special round of Bingo tonight and his own special prize was arranged.  Tonight he decided that instead of using the usual chips, he would mark his board using candy (swedish fish, starburst and gummy bears).  It was very creative and he was so pleased with himself.  We also continued to decorate his room with various arts and crafts and stickers throughout the day.  We've been in four rooms so far this week, and this one is our favorite.

Ty had a very good day, but it's not shaping up to be such a great night.  In fact, up until an hour ago I was wondering if I should push to go home as early as tomorrow.  As those thoughts were swimming in my head, however, Ty woke up in severe pain.  He was absolutely freaking out because his head was hurting so bad.  He was inconsolable and I couldn't even get a word out of him through the screams.  Reluctantly, I had to order morphine.  He hadn't needed any pain meds since 9AM this morning and I was so sad to see him suffering like that again.  This whole week has been really bad as far as the pain goes.  In fact, on Monday morning he had one headache that was so excruciating that Ty went unconscious for a few seconds because he wouldn't breathe.  It was horrific.  I'm 36 years old and I've never felt such pain.  I want it.  I wish it was mine more than you can imagine.  I lay next to him and stare at his face while he's sleeping praying for a headache of my own.

I just want this nasty virus to leave him alone.  He's getting there, it's just taking way too long for my liking.  If he has a great night tonight, maybe we can discuss going home with the team tomorrow.   I would love to get him home, but not if he is going to have those kind of episodes at home.  We'll see how he does over the next 18 - 24 hours.  I am not attaching this picture for more sympathy (well, maybe a little) but I couldn't capture any happier photos and I wanted to show you all how swollen his poor face is.  His eyes especially.  He gained 2.2 pounds over the past week and he hasn't eaten a single thing.  He is retaining a whole lot of fluids, it's just so strange.  I am getting so anxious for this bout of illness to be over already.  I want him to enjoy the beautiful weather we've been having.


Have I told you lately how much I love our nurses here?  They are the best.  Everyone here is so wonderful, I feel so lucky to be surrounded by such caring people during our most difficult times. 

I went home for a few hours yesterday while Lou was here so I could spend time with Gavin. It was so great because I was missing him so much!  He was so sweet, he asked me if Ty got sick because he ate too many jellybeans.  So cute!  After I put him to bed I took a long, hot shower and got back in my car to drive into the city.  There was the most beautiful full moon and Ty's star was shining so bright.  It made me feel happy.  He will be back to himself soon.   

4 comments:

  1. Oh my poor sweet SuperTy. U look miserable nd I just want u to feel better. Cindy, I'm sure ur right and it will be soon. In the meantime could u please give him hugs nd kisses from all of us praying for and believing in him? Thanks.

    All my love always,
    Elaine

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  2. Poor Ty has been through more pain than anyone should have to endure in a lifetime. He amazes me with his strength. I wish for a speedy recovery so you all can enjoy the warm sun and beautiful days ahead:)
    Fingers crossed that you are able to leave very soon with those headaches under control. Big Hugs to Ty!!!
    Michelle

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  3. My heart absolutely aches reading this post and seeing Ty's pics the last few days. The smile we love so much has a pained expression. It is heartbreaking!!

    Is there still no diagnosis? I am aure you want to know as much as we all want to know.

    I really hope Ty has a great day today and y'all get to go home sometime soon. I am praying for NO more headaches for Ty.

    Love,
    Jan
    Georgia

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  4. Cindy,

    I have been following your Angel ty for over a year.
    Please go to this website and have the doctors check him for all the symptoms.
    Sometimes things are overlooked, but PLEASE go here.
    http://www.ninds.nih.gov/disorders/encephalitis_meningitis/detail_encephalitis_meningitis.htm

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