Monday, June 20, 2011

Pre-surgery stress

I can't even believe we are here again.  Awaiting Ty's third major tumor resection.  If it wasn't all in his brain, maybe it wouldn't be so scary, but really… how many times can we choose to open up my poor baby boy's skull?  This has been such a difficult decision and we are completely terrified, but we are also so hopeful. 

Before going to sleep on the eve of surgery, my mind is absolutely racing.  But my thoughts are so intense and so scattered that I can't even organize them in order to put them down on cyber-paper.  Instead, I can some of our most intense feelings in simple terms... 

Lou and I are more scared of Ty losing his speech, motor skills or other brain damage than we are of losing our precious baby in surgery. The whole reason why we opted to do this is to make things better for him and we fear the regrets we will face if it doesn't go well.  As a result, our anxiety level is at an all-time high, and we are having a hard time keeping ourselves in check.  Today has been a tough day with Ty, which makes us so sad in case, God forbid, things don't go smoothly.  We want to treasure every minute with Ty, but today he really didn't allow us that.  He was either sleeping or miserable all day.  And by miserable, I mean unbearable.  The steroids make him so angry, it is impossible to calm him down at times and that is just not Ty.  He is not feeling or acting like himself and that makes us so sad. 

Considering what we are faced with tomorrow, we managed to have a relatively normal day today.  We were visited by family and friends.  We ate (so stop worrying).  We did laundry (in fact, I even stepped out to buy a new outfit so I could wash the one I've been living in).  And this evening, Lou and I left the sleeping Tyrant in my mom's care so we could grab some well-deserved sushi and beers!  It felt a little wrong to leave, but without those spontaneous moments of solace Lou and I would surely fall apart. 

Now I am going to crawl into bed next to Ty and close my eyes.  Don't be jealous, but look at what I get to snuggle up with right now :)  I hope I don't bother him with all of the kisses I will be placing all over his head and I hope I can find a way to actually get some sleep in the midst of all this chaos (the internal and external chaos that surrounds me).   Surgery tomorrow won't begin until about noon and it will go for at least six hours.  We promise to keep you updated as often as possible.  Thank you so much for your continued love and support.  XOXO, with love from the Campbell's.


By the way, just a quick side note.  After five shunt revisions, Ty's scans show that his ventricles are back to normal in his brain.  So much for the unexplained chronic hydrocephalus that kept Ty on morphine for six months.  The new shunt is finally a huge success! 

23 comments:

  1. Hoping for a good nights sleep for you all. stay confident. you trust your doctor. He'll do the right thing. And never live in regrets. You made a decision, right or wrong. Stick with that and know you're doing the best for Ty. He needs you to continue to help him fight. And I know you'll do that forever. Hugs and kisses from the McCarthy's. Remember to bring your prayer shawl tomorrow :)

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  2. You are so right Cindy! We are totally jealous that you get to cuddle up with that handsome little man!! We will be praying that God protect all of Ty's brain... that he protect every vain, every vessel, and every nerve, so that Ty will be able to function normally and so that he will not be affected by the surgery in any way with the exception of removing the tumor completely and indefinetly! I'll be praying for you all tomorrow as well! God Bless ALL of you.

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  3. I AM jealous of what you get to snuggle up with tonight. The most handsome Tyrant in the world!

    I can see a peaceful calm over you in the hospital room tonight. You are probably sleeping right now. Shhhhhhh. I sent a thousand angels in my mind's eye and they are all packed in there - hushing the babies and making sure the pumps don't beep. It is dark and quiet. My beautiful friend and her beautiful boy are comfortable.

    Another day of waiting tomorrow. The worst kind of waiting.

    I'm sorry you have to struggle with these awful decisions, but you are the best decision maker in the world. I would want you to make all the decisions for me! (Unless that was to go pick out a movie at Blockbuster). No really - I really mean that. You and Lou are so smart and amazing. I trust your decisions completely and 100%. I just wish you didn't have to make them. But please know that your decisions are the right ones. You know why? Because I said so and just trust me I am right!

    We probably get around ten post-op craniotomies in the PICU per week. There are never complications. I can't think of one in all my years. Hard to believe but honest to God!

    Tonight may the surgeons, anesthesiologists, nurses and all hospital staff be well rested. Tomorrow they will do their best work. May everything go perfectly smoothly in perfect timing and in perfect place. God, please allow them to do their finest work tomorrow! For they are skilled and practiced and studied and I bless them now with all of the love in the Universe. May they finish faster than expected, and may Ty surprise us with an amazing recovery. Can you see the angels hovering and guiding ever move in the Operating Room? I can. A whole thousand of them in one tiny room! There goes another one. 1,001 angels! I picture them all!

    You guys are all I think of and I just wish I were there. It makes me glad that Kelly is there :) :) :) :) McCarron! The best!

    I know, I know - get your own blog Col. LOL!!!

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  4. Hi, you don't know me but I came across your blog on babycenter.com and I want you to know I'll be praying for Ty tonight. I just recently became a mommy and I couldn't imagine anything happening to my little girl. You and your family are so strong, I don't think you are foolish at all for fighting. You are doing what every parent should do for their child; you are being Ty's rock and fighting for what is best for him. God is great and no matter what He is always with you. I truly hope Ty's surgery goes well and I hope someday you guys see an end to this cancer. Be strong, keep fighting, and NEVER lose faith in God's power.

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  5. So the surgery is today (well, I am ahead of you since I live in Germany). I will be praying all day for Ty and hoping that everything will be just fine! Trust your surgeon, I bet he is very good at doing his job!
    I know the choices you have to make are very, very difficult but you know what is best for Ty, so please do not quarrel with the decisions you make!
    I am sending you peace, strength and hope for this difficult day to bear!

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  6. after reading your post yesterday i kept coming back like every 2 hrs for an update!! I am praying and begging for everything to go nice and smooth. I pray this will be the one! 3x times a charm! i think that's the saying!! you are amazing!
    Bridget
    Baltimore Md

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  7. Cindy, Lou, Gavin and my hero SuperTy,

    My thoughts, prayers and love are with all of you today as you face yet another hurdle before the victory lap. I pray that God grants you stregnth and peace to go through today's struggles all the while knowing that Ty will prevail, as he always has.

    Cindy and Lou, don't question or regret your decisions - you are doing the best you can (which is WAY MORE than most of us would be capable of) for that baby boy and you are making decisions with his best interest at heart.

    SuperTy, My heart is with you today and all days. I know your surgery will go well, but my heart aches for the suffering you've had to endure. Hang in there and keep fighting.

    Lots of Love,
    The Talbot Family in MA

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  8. So very jealous of you stealing those little kisses !!
    I will be praying and thinking of the Campbell family today, as I do everyday. Please know that Lou and you made the only choice there was, the choice to fight and do all you can for your son.
    May God hold Ty and guide the doctors hands as they work.
    We will be awaiting the good news.

    The Hines faimly in Kingston NY
    And the Iron Riders MC

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  9. I won't give up. I'll be thinking of & praying for Ty today.

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  10. Yes I am totally jealous!!! I would crawl in that scrumptious neck and just smell in his goodness!! You are one lucky mommy! Will be praying hard for Ty and his surgery,with the best possible outcome!!!

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  11. I will be thinking and praying for Ty, the Doctors, nurses, you and Lou all day today. I know this isn't an easy procedure, but from all you have said in your previous posts, Ty's Drs. are very skilled and trusted individuals.

    Try to find some peace today throughout all the stress. I worry for you and your health, as well.

    Lifting Ty up in Georgia,
    Jan

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  12. My thoughts and prayers are with all of you today. Please know that all of us whose hearts have been touched by Ty will be praying for him and hoping for the best possible outcome. Don't ever doubt yourselves. You are amazing parents and role models of strength for all of us. Stay strong and keep the faith!

    Ann from Buffalo

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  13. My family will be praying for your beautiful boy and your loving family. Everything is going to be ok. I believe this.

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  14. I will continue to pray for my Hero. I also pray for strenght for you and Lou.

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  15. Praying for Super Ty and the whole family! From one mother to another never doubt yourself you are doing everything in your power to save your little angel! May God give you and Lou strength to make it thru the next few hours!

    Lord I pray that you give the surgeons steady hands and that you send your guardian angels to watch and protect our precious TY!

    God Bless you Always!

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  16. Cindy - I am praying for mistakes! Yes that's right - mistakes - in the old MRI and CT scan. I am praying for those images to be mistakes and that when they open Ty up they realize that he is getting better. I am praying for a complete healing of this precious baby. I am praying for an unexplained miracle and that the doctors are left shaking their heads saying - we don't know how - but this baby is on the mend. I am praying for precision in the doctors hands and peace in their decisions as they operate. I am praying for you to feel confident that you (and Lou) have made all of the right decisions. I am praying all day. Hang in there - you are awesome!

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  17. Keep the faith. I am praying on my end that little Ty will be miraculously healed...by God of course :) God Bless!

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  18. Oh Cindy and Lou, I can't even imagine the anxiety you must be feeling. I was always told to believe what is, never what if. Never worry about the what if's. Keep dealing with the what is just like you're doing today. You made an informed decision for the best outcome for Ty. I think you are the most incredible parents around! You're right, miracles do happen. My niece was diagnosed with leukemia at 19 and was told she wouldn't be able to have children. She had our "miracle baby" and he is amazing! NEVER give up hope. Super Ty and his Super Family can beat this!
    I'll continue to watch for good news! Keep your chin up and stay strong!
    Michelle from N.H.

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  19. Simply putting it in God’s hands today!

    Sending unending prayers for all who care for Ty today - that they use their God given talents to do God’s work! And, continuing to send prayers of thanksgiving for the answered prayer of an option for Ty!

    While no one would want you to experience one moment of struggle or even nusance while on this journey that you never expected to travel, I hope that it provides you some amount of peace to know that God has a plan and He has no doubt been preparing you for the emence challenges that you have encountered and handled with pure grace! You are a Blessing to your children and have allowed so many to experience the love of God by sharing your faith and love for each other with all of us.

    “We can only appreciate the miracle of a sunrise if we have waited in the darkness”

    The Schopfers
    Sherman, CT

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  20. i am praying with all my heart and soul that lil Ty comes out perfect from surgery and that God gives him his long awaited miracle. ENOUGH suffering for lil Ty and family. i think of lil Ty from the moment i get up in the morning with my morning prayer till the time i go to bed with my bed time prayer. i know you made the right decision in going forward with this surgery i beleive any loving, caring, dedicated parents would also choose this. May God please hear our prayers. will be waiting so anxiously for lil Tys update. God bless

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  21. My heart bleeds for you and what your family is dealing with. Praying for a successful procedure and minimal pain for Ty as he recovers.

    Stay strong...

    ~Jessica
    IL

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  22. I am saying prayers for Ty and your family. I've been reading your blogs for months now and have just fallen in love with Ty. I admire the strength of you and your husband. If I lived near you I'd want to come help you with Ty and Gavin. I have nieces and nephews that are around Ty's age and they are the loves of my life. My 5 year old nephew is my little angel and it kills me when he cries or gets hurt and I just scoop him up and snuggle him. I think of Ty as a little nephew I haven't had the pleasure of meeting yet and it hurts to know he has to suffer and I can't help or give kisses and snuggles. You are blessed to have such a sweet little fighter and he is blessed to have such amazing parents. Thank you for your blog. I'm praying for Ty to get better! sending love and prayers all day today.

    Annette
    Los Angeles, CA

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  23. After reading the posts of all our fellow believers there is not much more I can say. I love you guys and I agree that you should never regret any decisions you make for our little fighter. YOU have his best interest at heart and YOU WILL make the best, most informed decision.

    I am praying every minute I possibly can. My mind and heart are filled with SuperTy. I am sending nothing but potitive energy your way. MIRACLES HAPPEN!!!! BELIEVE!!!

    All my love to the entire Campbell family,
    Elaine

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