Chutes, ladders and belly tube feeds

We played Chutes and Ladders over a dozen times tonight. Ty was experiencing another one of his famous winning streaks ;) Every win was followed with him saying "I want to pway again," to which we all gave an exaggerated moan and set up the board again. I wish I could say that we enjoyed every minute, but in truth it was pretty torturous :)

We had to feed Ty Pedialyte and baby formula through his belly tube all day today. It made him sick several times, but we just didn't want to go another day without any nutrition and little hydration. Especially given the fact that the only thing he ate over the past two days was some pineapple. It was sad for me when I took out the pump and pole. We hadn't used it in so long and some of the parts were still packed in boxes from when we moved late last year. I guess I just hoped we would never need it again. It's okay, though. It will help to make him strong.

Other than that, today wasn't much different than what we've experienced since getting home from the hospital last week. Physically, Ty is pretty weak, suffering from head pain and vomiting frequently. Mentally, he has been getting sad, but it passes quickly and he is in really good spirits the majority of the time. He is happy to be home... We all are.

Next visit to the doctors is scheduled for Friday, so we plan to just lay low until then. Hugs and kisses to all from Ty.

Comments

  1. Colleen RosenFebruary 23, 2011 at 1:49 AM

    Hearing that Ty is 'in really good spirits the majority of time' is the best piece of news in the whole world to me right now. I feel really happy about that :) :)

    ReplyDelete
  2. jaylynsmomFebruary 23, 2011 at 7:49 AM

    Glad you had a good family game night :) And with what Colleen above mentioned, hearding that Ty is is good spirits is amazing! Thinking of Ty and family :)

    ReplyDelete
  3. UnknownFebruary 23, 2011 at 10:33 AM

    Simple things in life make ty happy. Chutes and ladders... Good luck this week, we are pulling for you

    ReplyDelete
  4. TraceyFebruary 23, 2011 at 10:35 AM

    You made me SO happy today! Keep the good news coming, and positive thoughts for Friday. Sending hugs and kisses right back to ty. Did he get the?

    ReplyDelete
  5. jmoFebruary 23, 2011 at 4:47 PM

    We've been following your story for months and have been praying for sweet little Ty ever since. He's so precious and amazing. Keep fighiting and inspiring so many of us!!

    ReplyDelete
  6. Rosalyn GaztambideFebruary 23, 2011 at 5:02 PM

    Hola!

    We are glad things are kind of relax.
    We hope Ty can stand food better soon.

    We will continue praying that on Friday a MIRACLE is revealed.

    We send our LOVE always!

    Remember:
    Patience is the best medicine. - John Florio

    Patience is the best remedy for every trouble.
    Titus Maccius Plautus

    Patience is the companion of wisdom. - Saint Augustine

    ReplyDelete
  7. CDN MummyFebruary 24, 2011 at 9:39 AM

    It's the good times he will remember when this is all over. I love that you and your family are making as many as you can during these times. One day Ty will thank you!

    ReplyDelete
  8. TinkFebruary 24, 2011 at 10:43 PM

    A few nights ago I read every single post you've written from the beginning and am falling more in love with Ty, you and ur family. I'm from Long Island (Deer Park originally, now live in Amity Harbor) and had no idea you guys used to live so close. I want to do whatever I can to help you all and am so happy that even with all the struggles you guys can experience a fun game night. That is true determination, love and positivity, something u instill in Ty everyday. Good luck tomorrow. Will be praying hard tonight you get good news. God Bless!

    ReplyDelete
  9. AnonymousFebruary 25, 2011 at 9:51 AM

    Dear Campbell Family,I heard about Ty through a friend of a friend. Our son Tyler had a clival chordoma and was treated by some of the doctors you may have used or consulted. He also was treated in Boston at MGH. If there is anything I can do to help you (hotel suggestions, doctors, nurses, resources here or in Boston) please do not hesitate to contact me. ddlbg@aol.com. Although we each experience the diagnosis and treatment differently because we are different people, we all share a common journey. I wish good health and happiness for Tyler and your family. I understand and empathize.

    ReplyDelete

Post a Comment

Popular posts from this blog

Our baby is finally free. Rest in peace Ty Louis Campbell.

Image
Ty Louis Campbell is gone, but his story continues.  This is our promise to him.  His impact on the world around him gives his short but inspirational life such meaning.  His soaring spirit will continue to fuel a fire in our hearts, and strangers around the world will continue to fall in love with the little boy who fought so valiantly.  The little boy who hurt so much, but maintained a bigger, brighter smile than the healthiest of children.  Ty never did break his fever.  He never really woke up.  Not until he decided to leave this earth and fly freely among the clouds.  At that very moment, he was awake.  He had returned to Lou and I to say goodbye.  To say our hearts are broken would be like saying it tickles to have your stomach ripped open with a spoon.  I went to bed last night with so much worry on my mind, but I was able to fall asleep because I was calmed by the fact that in his semi-conscious state, Ty seemed so incredibly peaceful and comfortable.  I laid down next
Read more

Anything but cancer

Image
Cancer is not welcome here.  It can never, ever, ever, ever, ever come back.  As I mentioned yesterday, Ty has been showing some physical symptoms that we haven't seen in a long time.  Please, God, don't let it be cancer again.  Anything but cancer. I spoke to Ty's doctor first thing this morning and he believes the increased weakness we are seeing on Ty's left side is not related to new cancer growth - but that doesn't rule out the possibility.  He feels that Ty is suffering from spasticity, which is becoming more visible now only because Ty is getting stronger.  As Ty's muscles begin to regain mass and tone, the neurological weakness on his left side is becoming more noticeable.  This spasticity is likely permanent, but also treatable with continued therapy.  When I spoke to his physical therapist later today, she agreed that it would explain what she is seeing, and then she reassured me that walking again is still a highly attainable goal for Ty.  And "
Read more

Our aching hearts

Image
My face is swollen.  My eyes are heavy.  I have been crying for what feels like an eternity.  But in between my tears, I have an overwhelming sense of freedom.  Today we were told that there are no more treatment options for Ty.  That his MRI Saturday night shows progressive lepto-meningial disease in three different areas.  Lou and I decided against surgery to fix Ty's shunt, and I am finally free from feeling responsible for whether or not he lives or dies.  Ty is in God's hands. No matter how many times I swore that I leave Ty in God's hands, I was always clinging onto him with every ounce of my being.  Researching.  Fighting.  Begging.  Doing anything in my power to find a way to save him.  Finally, I have exhausted my options and I am letting go.  I may be kicking and screaming, but I am still loosening my grip because I know that I have to.  We have tried so hard, for so long.  Ty's doctors and nurses, they are so special.  They have given us beautiful. prec
Read more