Monday, May 16, 2011

You talkin' to me??

This picture says it all.  Although it was taken back in October before he lost his hair, this is pretty much the attitude Ty's been sporting the past couple of days.  "You talkin' to me?"


The little fighter is in a baaaad mood!  I am chalking it up to his fighting spirit and the fact that he was up all night last night.  I think he just wants to get busted outta here.  When he's not complaining, he's quiet and staring off at the ceiling, which worries me because he seems so sad and lost.  The hospital really takes a toll on him.  Luckily, we expect to go home Wednesday or Thursday.  His surgery to place a new shunt is scheduled for tomorrow (there is a big case on the schedule before him, so he probably won't go in until late afternoon), then the doctors will want to monitor him for a minimum of 24 hours before letting us go home. 

Last night, Ty tortured us. He slept off the chemo for the majority of the day on Sunday, so he was just restless.  I was up with him until I completely lost my patience around 3 in the morning.  At that time I rolled over and turned my back to Ty and Lou woke up and took over (I sleep in the hospital bed with Ty, Lou sleeps on the chair/couch next to us).  For the next three hours or so, Ty would ask for Daddy every five minutes or so.  He was relentless. 
"Daaaaa-Deeee.... Um... My head herwts"
"Daaaaa-Deeee.... Um... I can't get comfy"
"Daaaaa-Deeee.... Um... I have to pee"
"Daaaaa-Deeee.... Um... I cold"
"Daaaaa-Deeee.... Um... I sweaty"
"Daaaaa-Deeee.... Um... I can't sweep"

When Ty wasn't badgering us, his pumps were beeping the most obnoxious sound you can imagine.  BEEP.  BEEP. BEEP.  Air in line.  BEEP. BEEP. BEEP.  Infusion complete.  BEEP. BEEP. BEEP.  Occlusion.  It is a sound that haunts me :)  The phone rings while I'm sleeping and I jump up to call the nurse... air in line!

Of course, he's exhausted today.  He keeps falling asleep and I'm grinding my teeth because I know this means more of the same for us when night comes.  If only I was capable of taking a nap myself.  I know... I know... I should nap while he's napping.  It just doesn't happen for me.  I can't settle down during the day enough to actually fall asleep or even feel somewhat rested.  In fact, trying to take a nap only ends up stressing me out because I'm trying too hard to relax. 

The best release for me is to get outside, and I did just that yesterday.  My friend Catherine came to the hospital to visit with me, Lou and Ty.  Then she accompanied me to get a manicure and pick up dinner for the boys.  She shared some hysterical stories and we talked about silly, everyday stuff, and it meant so much to me.  I soooo need to do that.  To get out and talk about fun, normal things.  To get my nails done. 

Of course, anyone who knows me knows that it's no surprise I left my cell phone at the salon.  I thought it was lost forever until my Mom called the room this morning.  She said a nice woman at the nail salon answered my cell phone this morning and I should go pick it up.  Woo Hoo... I found my phone safe and sound less than 24 hours later.  This is not at all uncommon for me.  In fact, I was once on a business trip in Chicago, lost my phone in a cab, and someone mailed it back to me from Wisconsin.  Another time a NYC cab driver actually dropped off my phone (my entire purse, actually) at my apartment on Christmas Eve (in exchange for my best Christmas cookies).  I am unlucky in misplacing my phone, but very lucky in finding it.  It's like I always say... in my experience, most people are kind and good! 

Can't wait to get my sweet baby boy home again.  The doctor says the Cisplatin shouldn't knock him down as badly as he has experienced with his previous regimen, so I'm hoping he will be feeling pretty good and ready to start exercising so we can get him on his feet this summer.  In fact, the Physical and Occupational Therapists came by today and they were so great with him.  No matter what his mood is like (and as you can imagine, today he was very reluctant), they were so good at forcing him to participate and keep his arms and legs moving.  I was so glad they came because every day that he lays in a hospital bed can decrease the strength that we've been working so hard to build up.  In addition, the nutritionist put Ty on TPN again (which is intravenous nutrition - sugars and fats).  It is a relief because he has no appetite and hasn't eaten a thing in days.  His stomach has been deconditioned as a result, and it is too weak to handle any feedings through his belly tube.  So, TPN will at least help to keep him strong during chemo.  At home we will probably only administer TPN at night until he is eating better on his own.  I am so relieved  because worrying about his nutrition is one of my greatest concerns.  I don't think there's a normal mom on the planet that doesn't worry about what her kids are eating, so imagine what it's like when he doesn't eat anything while taking life-threatening medications.  I was told to try and get him up to 1,000 calories a day and I was only getting 300 - 400 most days.  It's stressful!  So, at least that weight is lifted from my shoulders for the time being.  Phew!  On the other hand, there are days when I think Gavin might be getting 2,000+ calories!!  He is in the middle of a growth spurt or something cuz that kid is getting HUGE :)  And, he's getting a bit of a 'tude himself. 


Please continue to share Ty's story.  All of your positive thoughts, prayers and best wishes keep us all so strong.   Tremendous thanks, hugs and kisses to you all. 

10 comments:

  1. Cindy & Lou,

    I am so happy to hear that you guys will be getting to go home soon! :) Sorry that you had such a rough night. When they are up, they are up, and want to ask five million questions, lol!

    Wow, its great that you were able to go out for a little bit! I'm sure that was just what you needed! Sometimes you just need that "me" time!

    Your boys are beautiful, and Ty is going to beat this! Just continue to stay strong!

    xxxx
    oooo

    Joy Marielle
    Baltimore, MD

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  2. Cindy, don't let those what if's consume you. Always tackle what is! The what if's, are cancers way of reminding you that he is near. Screw him!
    You and your family conyinue to amaze me everyday! Stay strong:) Super Ty, let's knock this cancer out for good!
    Love and prayers from NH

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  3. Cindy, I am so happy to read y'all may be home as early as the middle of the week. I HOPE SO!

    A pedicure and friend time was just what you needed. Now, some sleep/rest would be wonderful, huh?! :)

    What a strong family and resilient little Ty! He is amazing! He has been thru way too much for his age and still seems to have such a positive attitude and a fight to beat this.

    Hoping y'all have a better day today,
    Jan
    Georgia

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  4. I so hope you get to go home. I pray everyday for Ty and will be praying for a good surgery with no complications so that you get to go home sooner than later. Hugs and prayers from Canada!

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  5. As always you continue to amaze me with your ability to laugh about things that would drive me up a wall given the circumstances. Your positive attitude will carry you far.

    On another note, yes I know what it is like to have a child sleep all day and want to be up all night. Poor baby has his am/pm confused. This will change quick enough as he starts to feel better and gets HOME to a normal routine.

    God Bless your family, keep them strong. Don't let doubt and negative feelings take over. We are praying daily with all the love we have for your family. I expect happy times ahead.

    Love to all,
    Elaine

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  6. Cindy,

    The first thing I do every day when I get to work is check up on Ty. He is an inspiration to me as are you. I pray for all of you every day. You have been an amazing role model for so many of us mother's out here reading your blog and wondering how you manage to get through this ordeal with such grace and strength. Never doubt your strength. Ty is a special little boy. I have shared your blog with my 18 year old son and my 15 year daughter and we are all thinking about Ty and sending positive thoughts your way every day. He has touched so many lives. It is really incredible. Please know you are not alone in your fight. We are all pulling for you.

    Ann from Buffalo

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  7. Thoughts and prayers are with you! The shunt placement will go smooth and you will be home in no time!! Yay!!!

    Glad to hear you got a bit if a break!

    I work nights and the kids are up raring to go during the day so sleep can be hard at times, especially when they are sick. I also drink coffee like its my second job! I got the app 'ambience' to help quiet the outside noise might help u! Try and get twenty minutes here and there definitely helps with the edge!

    Ty will get stronger again, the beginning is rough but good days are coming!!!

    Love and prayers!!
    Brooke, Eric, Emily and Owen <3 <3 <3

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  8. As always, thinking and praying that everything goes well with Ty's procedure today.

    You are such an inspiration to all.

    Hugs and Kisses to that sweet baby boy!

    ~Jessica
    IL

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  9. Hi there. I've been kind of quiet b/c I've been feeling sad and down about Ty. Well no more of that!

    Positive thoughts only for the most handsome little boy in the world (besides maybe Gavin- OMG hunk of burning love with his hooters bib!)

    We must befriend this terrible chemo shit b/c it is on our side. I'm cheering it on! Goooooo chemo!!! FIGHT FIGHT FIGHT! WIN WIN WIN!!!

    I picture Ty in perfect health and feeling like a new little man. I picture all of the healthy cells in his body functioning in all the right ways. I picture the chemo desomating every last cancer cell. I picture us celebrating at his birthday party in October. I can see it and I believe it all!

    Cindy do you have netflix to watch on your computer? There are so many great documentaries I can recommend that will take your mind off things.

    Love and kisses,
    C

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  10. Cindy,

    You and Lou are doing such a great job!!! Don’t you just love those late night Daaaaaa Deeeeees? :O)

    Keep strong sweet baby boy! On the way to 100% Bedda!!!

    Love you all,
    Mary E. King and the rest of the King family

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