Wednesday, February 23, 2011

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.

9 comments:

  1. 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 :) :)

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  2. 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 :)

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

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  4. 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?

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  5. 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!!

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  6. 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

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  7. 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!

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  8. 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!

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  9. 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.

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