Sunday, February 6, 2011

Super Bowl Sunday at Sloan Kettering

Yes, that's right.  We are back in the hospital with Ty.  I haven't been able to update my posts because things became really difficult at home over the past few days.  Early this week, Ty's condition started worsening.  He was getting more and more sleepy, his speech was getting worse and he was increasingly weak.  His breathing began to sound labored on Thursday and by last night we were on the phone with his neurology team discussing whether or not we needed to rush to the hospital again.  Instead, it was suggested that we try to increase his steroid at home, see how he does.  Lou and I saw little improvement, so we knew we would have to come in.

I was stalling all day today, we didn't even leave until 3PM and you should have seen how long it took me to pack our bags.  On one hand, I was a nervous wreck over his condition and wanted desperately to be in a place where I know they can address any urgent medical issues, but on the other hand I have been so upset seeing my baby like this and so scared of the unknown that lies ahead that I have been reluctant to face this reality.  At least while we are home I can be positive and hope that he improves with each passing day.  Here at the hospital I know he will be faced with a number of blood draws, imaging under anesthesia, endless exams from countless doctors, flashlights in the eyes every 20 minutes… followed by the serious discussions with his doctors about risk versus benefits and what our next steps should be.

Will Ty be in surgery a couple of days from now?  Maybe.  Will Ty be in the hospital for weeks?  Months?  Will they advise us to do nothing at all at this point??  I can't bear the thought. 

Ty showed us that he was facing similar anxiety over coming back to the hospital.  He kept saying he didn't have to go the hospital, that he was feeling better, even though he could barely keep his eyes open or get the words out.  When we pulled up to the hospital he said he wants to watch a movie when we get home.  Lou and I could barely hold it together to tell him that we were going to have to stay over for a few nights.   

Ty's medical condition is still so complicated.  His new shunt is said to be working properly, but his CT scan from this evening shows that his ventricles are still very enlarged - in fact slightly larger than his last scan.  That means he is still suffering from hydrocephalus.  His scan also shows that his tumor is - for the most part - stable, which doesn't explain why his condition would be worsening.  Lastly, they drew some CSF fluid for cultures and we are told that the stain is already coming back "gram positive".  This means he likely has another infection in his cerebral spinal fluid.  Unbelievable.  Really.  He's been on antibiotics since January 18th, how does that even happen!!  My poor baby.  He is so amazing, I don't think I would be able to do what he does and still have a smile on my face like he does. 

At least he is sleeping peacefully.  I wish Lou and I could do the same.  He is an angel.

9 comments:

  1. I'm so sorry you all are going through this, especially Ty. He IS an angel. That's for sure. I haven't even met Ty and he has touched my heart in such a special way. I am praying so very hard for him, even more today than ever. Keep us all posted, and give that special angel hugs and kisses.

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  2. I just heard about you today on Facebook. My mothers heart broke reading what you are going through. I am a complete stranger and yet i was sobbing as I read on no parent should ever have to go through what you two are dealing with. That sweet angel is blessed by you. I am so so sorry again. But I ask you that when you break down when you feel as if you can't take it anymore know that there are thousands of people who are holding you and your family up in prayer. My prayers won't cease and neither will my tears. I stand behind you praying for you. God Bless you

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  3. My Cindy I am soooooo sorry :(

    I was hoping all weekend that you were having a good weekend at home. This is just completely unbearable for anyone and it has been over a half a year now. This unknowing is absolutely hell.

    I wish you didn't have to bear one more neuro check, blood draw, sedation...all for the unknown. I wish we could understand a reason, or that we could feel OK in this life of uncertainty, but none of us can.

    I just want you, Lou and Ty to feel good and it is killing me more than anything that you can't feel good. I wish I could take you in my arms. I love you so much. My offer still stands to come be with you at any time you need.

    I'm all tears for my beloved friends :(
    Colleen

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  4. There are a few very powerful spiritual healers in South America who may be able to help. I know it sounds "far out", but miracles happen daily. I've been working in the energy healing field for awhile and I've seen and heard of amazing outcomes.

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  5. I just read about Ty's condition, I am so sorry, no child should have to ever suffer like this. You are blessed with such an adorable little boy. Sometimes when medicine doesn't work you have to turn to a much higher power for help. There is a monastery in Long Island City, NY called St. Irene Chrysovalantou, she is a very big miracle maker. I am not the most religious person but I have seen miracles made by this saint. Please, please take your son to visit and speak with the nuns there, they will give you something for Ty and instruct you what to do. i can't stress enough what a huge miracle maker this saint is. Email me for more info or just google it. mstyli7156@aol.com

    I will you all well,
    Maria

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  6. Praying that Ty is held tightly by his father in heaven who loves him. Pray that the pain will end and he will run and play. Pray that you will find comfort and peace in your quiet times with the Lord. Pray that angels on assignment will surround Ty. I pray you will constantly feel the love of your family and freinds as you fight this and beyond. May you know Jesus through this and know He loves you.

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  7. As a grandfather to six children, including a three year old boy, I can't begin to imagine what you're going through. God bless you for the love and dedication you've shown in saving your beautiful son. I know you've probably been getting alot of "do this", "try that" kind of advice, but PLEASE research the BURZYNSKI CLINIC in Houston, TX. Dr. Burzynski developed a treatment called antineoplasm that has proven especially effective in brain cancers. This treatment is non-invasive, and has no side effects. It is based on a protein produced by our own bodies.

    The FDA tried to shut him down many years ago for not using "standard" protocols for cancer treatment, but the PARENTS of the children he treated (and saved) actually went before congress and lobbied on his behalf! Be forwarned, however, your doctors will probably give you only negative comments on this treatment (if they've even heard of it) since it threatens their livelyhood. Just remeber, it is YOUR son we're talking about, not theirs!

    With love and prayers to you all.

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  8. All the hairs on my body stood up when I saw your son's eyes meet mine and it was just like he was looking through me in my souls heart eye. Then this message passed through my thoughts like lightening within me, The message was to reach you nake contact. I will explain my insight if you care to call. cell 305 619 0330 or phone which is also fax on 6th ring.Ask for Bobby. My Real name is Robert F Sawart llND, mddoc13@yahoo.com is my email address

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  9. Please look into Br Burzynski in Texas...he has a clinic that has HUGE success with cancer especially in children. Get the DVD and watch it you'll be amazed and I KNOW it would help Ty. I'm a true believer in holistic care...many naturopaths have CURED people from cancer but won't say a word cuz the drug companies will close them down...you'll understand if you watch the Dr Burznyski video. I beg you to be open minded and look into this doctor and his cancer research....I know he can help Ty....please please look into it. All my love to you and your whole family

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