Tuesday, May 22, 2012

Back to the grind

Ty is totally amazing.  Today was awesome.  Yesterday, too.  Tomorrow we go back to the grind.  We will return to our routine oxygen treatment in the morning, and possibly school/therapies in the afternoon (although I'm considering letting Ty play hookie for one more day so we can have some fun).

We got home yesterday evening and a bath was the first thing in order.  We needed to wash all of the surgical grime that covered our poor baby, and he was happy to do it.  Despite the fact that he just had surgery Saturday night, he is feeling terrific and his pain is practically non-existent.  Two weeks ago we would never be able to move him or pick him up without him wincing in pain.  Today he is so much better off.  It is unrelated to the shunt surgery, but probably due to the improvement we saw in the brainstem area during Ty's MRI Wednesday.  The swelling is gone (thank you hyperbaric oxygen chamber!) and he is like a new kid.  Finally, he is feeling good.  Awesome, in fact. 

His physical strength is still slow to follow, but Lou and I see improvement every single day and we are filled with hope.  We are excited because we have so much faith in Ty's recovery. 

Just a couple of things to point out before I post the pictures of tubby time.  Ty was returned from the OR with a huge open wound on his cheek. It is from the tape on his face that held the tube in place (he was intubated for the duration of the surgery).  Someone in the OR was completely careless removing that tape, and ripped off several layers of skin along with it.  I am up in arms over it.  Regardless whether or not a child is under anesthesia - or a patient of any age, for that matter - they should be treated with the utmost care.  This is just another wound on my poor baby that was totally unnecessary and could have been avoided.  Hopefully the oxygen therapy will help it to heal quickly, along with the incision on his head.

bumps and bruises can't stop me from smiling :)


All Clean!



It turns out that the shunt malfunction was due to a clog in the tubing that runs from the ventricles in Ty's brain, through the burr hole in his skull, and into the valve that sits right under his skin on the side of his head.  The valve then has another, longer piece of tubing that is attached to the bottom that runs all the way into Ty's abdomen to drain excess CSF fluid into his body cavity.  To help you visualize a VP shunt, I am attaching an illustration of the concept, and a photo of the hardware.


Lou and I actually watched a video of a similar surgery performed on a small child (thank you, you-tube) just to better understand what Ty has been going through.  It was totally brutal (yet fascinating) to watch, especially when the tubing is snaked from the top of the head into the abdomen.  I'm glad that wasn't necessary this time around.  His surgeons only had to replace the one piece of tubing up top - even the valve remained in tact.  

Ty is one super kid.  This was his seventh shunt revision in 18 months.  That is practically unheard of.  His neurosurgeon can't provide a theory as to why the tubing would ever get clogged, no one can, but it's just the way things seem to happen for poor Ty.  Nothing is easy for him, yet he always prevails.  He is such an incredible inspiration.  And he's only four years old!  Imagine how amazing he will be when he's forty!  :)

One last medical update.  Ty started his next cycle of daily chemo (temodar this time).  He got sick twice last night, which was really upsetting for everyone.  After the second time - 3 in the morning - he gave me the biggest smile in the world and said "now I peel bedda."  We stayed up joking around and cleaning up for about 15 minutes or so before drifting back to sleep in our best snuggling position.  I hope he tolerates the chemo better as this continues.  He usually does so well, but I imagine with all he's been through over the past few days his belly is just extra sensitive. 

Thanks for all of your love and prayers.  Goodnight.





9 comments:

  1. Allo I can say is I LOVE YOU TY!!!! You continue to amaze and inspire so many people. I cried such happy tears when I read that the swelling is down and clean MRI!!! Keep fighting, if anyone can do it you can. Your mommy is so right...you are going to be on absolutely amazingly incredible 40 year old. I'm sure I know where you get it from...your absolutley amazingly incredible mommy and daddy! SuperTy....YOU ROCK!!!

    All my love always,

    Elaine Hinkle

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  2. Ty is truly amazing. He is awe inspiring!

    Ann from Buffalo

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  3. Ty is truly amazing!!! Which is no surprise! You guys have provided an amazing support system that has helped him to stay strong, positive and soooo loved. I don't know how he does it...and he always has the sweetest smile & look on his face, even in the most difficult times. What a special boy!
    We are heading to Rome next week and taking special "Ty prayer notes" for our visit to the the Vatican. We will be saying extra prayers for Ty, your family & all the kids suffering from this horrible disease! Praying that Ty continues to progress everyday and will someday be chewing gum on the back of Harley-Davidson! (Well, if mom allows it!)
    Love to the Campbell family! xxoo

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  4. I am so happy to read this today. Hopefully everything from here on is about his incredible recovery. Praying that he gets a little bit or strength each day
    Thoughts and Prayers with you all

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  5. lil Ty is sooooooo incredibly precious!!! All I can say is that I keep praying to God everyday and thanking him too for lil Ty. You are an AMAZING family!!! xoxoxoxoxoxoxoxo

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  6. So glad to hear about Ty's pain going away! Hooray! May your life be made a little bit easier, as well as (of course) Ty's.

    I'm wondering what you did about the face tape insident. That is so effed up. I hope you got to tell the person who actually did it. A-hole!

    Keep forging ahead. The future is bright!

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  7. I'm so glad Ty is "peeling betta!" Bless his heart. I pray this is just the first step in seeing many more improvements for him. God Bless.

    Janet
    COLE's Prayer Team

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  8. Hi Ty and Campbell family.

    I am so glad to hear that Ty is doing better! I too have a shunt and know how awful it is when it malfunctions. I have had my shunt all my life (40 yrs.) do to he affects of Spina Bifida. I just wanted to try to give you a little bit of hope. The shunt situation should get much better as he gets older. I haven't had to have a shunt revision since 1993 (knock on wood).

    As far as the wound on his cheek from the tape that was ripped off...all I have to say is that the person who did that is VERY lucky that Ty is not my child. Heads would have rolled IMMEDIATEY and I would have seen to it that he/she was no longer working in that field.

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  9. Ay, ay, ay Cindy....
    I can not believe how all of this continues.
    God really loves you all!
    Know that you all are ALWAYS in our prayers
    and we hope that with each day you leave behind is a day closer to a strong and healthy Ty.
    Our love with Super strength goes you way!
    Remember:
    "We must accept finite disappointment, but never lose infinite hope." Martin Luther King, Jr.

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