Monday, September 10, 2012

Preschool and shunt surgeries

Gavin started preschool today.  He is so big for just three-years old!  He is going to the same adorable school that Ty attended. In fact, a week or two ago Ty overheard us talking about school and he said, “I think I have to go back to school soon, too!”  I told him he will go back to school soon, not to worry.  “Good, because I think they miss me.”  It makes me sad because Ty will not be going back to the preschool he loved so much, but I do think the at-home schooling mixed with the various therapies he will receive on school premises will be a good routine for him.  He received some awesome arts and crafts and an adorable backpack in the mail to get him excited for it.  Thank you!

Would NOT sit still for the obligatory photo
I suffered a few ice-picks to the heart when I entered the school and saw some of the children from Ty’s class (last year) all dressed up and ready to start their second year of pre-school.  Ty should have been with them.  Hugging them hello again after the long summer, ready to start another year. 
It was a morning riddled with anxiety and exhaustion.  Ty has had an increase in secretions ever since we came home from the hospital on Friday.  His breathing is very “junky” and he was only able to sleep maybe two hours total last night because of it.  Of course, I emailed his nurse at Sloan Kettering and told her we needed to bring him in, but first I wanted to get Gavin off to preschool.  Poor Gavin can never have his day.  We had to drive all the way into the city after dropping Gavin off, and we spent the entire day in clinic where Ty was accessed, given oxygen, suctioned, cultured, etc.  As we drive home right now he has a consistent, rumbling cough that is so congested I am sick to my stomach over it.  It is constant, he is too weak to cough it up, and he is in misery.  We were sent home with more antibiotics, a nebulizer and a suction machine so we hope this will help his condition until whatever it is passes.   In the meantime, if Lou and I don’t get some sleep tonight, we might lose our minds. 

The Shunt: Where it all began
So, where did Ty’s downward spiral begin?  It’s hard to say, but one thing is for sure… Ty has had an abnormally rough road by any standards.   It’s simply miraculous that he is still with us, and it infuriates me that he still suffers so much.  He just can’t catch a break.    It hurts me so bad (emotionally) that it is almost unbearable, but I keep it together for him and I rarely shed a tear because I can’t let my boys see me upset. 

Post op, craniotomy #2, externalized shunt to be replaced days later

Out of the 20 surgeries Ty has endured in two years, ten of them involved the placement or revision of  a VP shunt.  His first shunt was placed just three days after his very first surgery.  When the surgeon removed the tumor original endoscopically, he broke through the dura/meninges, which is a membrane that separates and protects the Central Nervous System from the rest of the body.  It is like a wall, and on the other side is where the cerebral spinal fluid (CSF) flows freely.  We were warned how dangerous it would be if this happened. The CSF fluid needs to be isolated, to remain free of exposure to ANY bacteria within the body, and the fact that his surgery caused bacteria from the nose and the mouth to travel into the Central Nervous System, we were told it would almost certainly result in an infection. 

Of course, they patched the hole in the dural wall, but they needed to keep the pressure in Ty’s head at a bare minimum so that the patch wouldn’t be compromised during the healing process.  The painful lumbar drain that was already in place was not adequate and prone to infection, so we had no choice but to to agree to shunt surgery.  In the beginning, every surgery like this was devastating.  We worried about if he would be able to play football with a shunt in his head, or even roughhouse with his brother.  Later, when they suggested a g-tube we were dead-set against it until we had no choice.  All of these things, we realize now, have saved his life. 

It hadn’t yet been confirmed, but Ty was suffering from MRSA meningitis at the time of the follow-up surgery to reinforce the patch and place the original shunt.  His entire central nervous system was septic, and in the weeks to follow Ty suffered worse pain than any migraine.  He couldn’t move, he couldn’t have any light in his room and he required a 24-hour morphine drip.  Not a drop of food or water entered his mouth for three weeks, and he was put on TPN.  He ran non-stop fevers for weeks on end.  We had to wear gowns and gloves just to enter his room.  To touch him.  He couldn't bear for me to even hold him for at least two weeks (the photo below was my favorite moment - finally he came into my lap). Every single day I prayed for a turnaround, and it felt like an eternity before he started to feel even a little better. 

FINALLY in my arms again

Herein lies the issues with the shunt.   Any hardware placed in the body is very “sticky” and bacteria harbors in the plastic like a parasite.  Since the shunt was exposed to MRSA (a very powerful and deadly bacteria) we knew it would have to be replaced, but that wouldn’t be possible unless he was cleared from the infection for several days/weeks before placing a new shunt, and after we lost so much precious time recovering from the infection alone, we were advised not to delay chemo another minute.

The decision was to keep Ty on antibiotics for the course of the first chemo cycle or two (that way, the infected shunt would not continue to infect the rest of the central nervous system). It was not the safest route, but we had to do it in order to be most aggressive against the tumor. That meant I had to hook him up to an IV pump of vancomycin every six hours for MONTHS.  It is very complicated what happened over the next few months in treatment, but the bottom line is that poor Ty contracted meningitis again (this time it was fungal as opposed to bacterial) and the shunt was finally replaced three months after it was originally placed.

http://www.youtube.com/watch?v=Aate1FtfTTE&feature=g-upl


The downward spiral continues from here.  Ty suffered chronic hydrocephalus which left his brain tissue scarred and means he will forever be shunt-dependant.  Ty suffered several clogs in his shunt because the original infections left his CSF fluid prone to build-up with proteins that stick to/collect in in the tubing/valve. Each time causing painful, life-threatening  hydrocephalus and replacement surgeries.  He also contracted several more infections of the Central Nervous System when his immune system was so compromised during treatment.  Each time an infection was contracted, the shunt needed to be replaced. His cancer metastasized and he needed to have each shunt replaced after those tumor resection surgeries.  His most recent surgery was simply because the skin where the last shunt was placed was just too thin after being re-opened and operated on so many times.  Can’t.  Catch.  A. Break. 


Post-op shunt revision #6

So, that’s the story.  The Shunt, the shunt, always the shunt.  It is a necessary evil in this journey, and I am keeping my fingers crossed again.  Ty baby has four huge incisions that are healing, and he is pretty banged up, but what I’m more concerned right now is his breathing.  It’s dreadful.  He sounds like an anti-smoking commercial and we don’t know whether it’s an increase in secretions from the anesthesia post-op or more.  We will have to keep doing what we’re doing… torturing the poor boy with the suction all night… and praying it gets better soon.


Post-op, shunt revision #10


15 comments:

  1. Prayers, prayers and more prayers. Your unwavering strength is admirable as is your love and dedication to your family.

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  2. Always, always praying for your family! I hope Gavin had a great day at school!

    Jenni

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  3. TY and Gavin are so adorable each in their own ways.Like you, sometimes I am at a loss for words for all ty's ups n downs. I hope his infection clears up real soon sending healing hugs your way. Gavin proably hates that ty suffers so much but he just goes with the flow in his own adorable way. I hope you feel some peace just because you deserve to. and your husband too. God bless all of you and may the healing continue. There is no such thing as a perfect way to handle all this but I we can pray that you are guided with peaceful easy feelings to guide you through all of this. There is an angel with Ty at all times. Keep the faith. much healing energy coming your way. Debbie from Hawaii

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  4. Just so UNFAIR!!
    Ty we love you. You are a true fighter and a hero to so many. Hope today you get a BREAK (and Mommy and Daddy too). Feel better little guy!

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  5. Unfair is right - i really wish you all could catch a break for once. Praying always for Ty - stay strong little man. I pray your breathing gets better quickly. Hugs to you and Lou. And I know Gavin's big day was bittersweet - I hope he is enjoying school and that Ty's home schooling goes well and keeps his spirits up.

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  6. Hope Ty feels better soon.

    It's heartbreaking. Ty is still my morning search since I bookmarked your blog on my phone, every morning!

    Taylor Swifts song? OMG. I was sobbing and keep watching it and keep sobbing and just completed my purchase on itunes. It's #1. I can't imagine what it means to you. She is amazing, it is amazing and so are the Campbells, especially Ty.

    Congrats to Gavin!

    From Angela in Carmel

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  7. I boo-hoo'ed on this one, as I do so many times while reading your posts. I had to get up and walk away from my desk and come back and finish reading. Ty, Lou & you are just SO strong!!! It is amazing! Ty IS amazing!!

    The video you uploaded was just too cute! Ty has the cutest little voice and he looked so happy and even healthy w/ all he was dealing w/ at the time. Again, amazing!

    I have followed your family for years now....I feel as though your pain is my pain. Your joy is my joy. Your hurt is my hurt. I feel for you and your family so deeply!

    I hope Ty continues to get better from his last revision and that Gavin enjoys school this week! :)

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  8. So excited for Galvin to start school. That is such good news. I pray every day for Ty and your family that all of this will soon be just a distant memory and he will be able to go to school and do everything a little boy should. Stay strong.. I can't imagine the thoughts that must go through your head. You are amazing and doing such a wonderful boy. Those boys are very lucky to have you
    God Bless you all.

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  9. Cindy & Lou,

    God it has been a long time since I have posted. I don't want you guys to think I ever forgot about Ty and your family. The truth is, your blogs finally started coming to my email so I read them on my blackberry so I am always catching up, however, guilty for not posting. :(

    Happy for Gavin! What a big boy! Alex started pre-k and lets just say that it wasn't successful. However, I think Gavin will do just fine! He looks great and so excited!

    I don't want to accept the fact that Ty will forever be shunt dependant. Every day there are cures invente dor diseases and research that I have to believe there is a better way. I know that it seems that Ty does not seem to ever get a break, but he is still here! I mean really, he is absolutely incredibly strong! He is amazing! Super Ty!

    As always, I think about you guys everyday!

    Team Ty! :)

    Joy Marielle
    Baltimore, MD

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  10. Heartbreaking! :-(
    We are all thinking and praying for Ty and your whole family! Gavin and my son John were in CCNS Toddler Time together last year---you have 2 beautiful angels!
    God Bless you All----PLEASE! XOXO

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