Thursday, June 23, 2011

Much love to our nurses

Ty has been so depressed today, and I really can't blame him.  I think it's just a combination of the steroids, the withdrawal from the wealth of narcotics he was on when he was intubated, the constant chaos in the Pediatric ICU and the fact that we are sharing a room with two older teenagers.  Both of whom are incredible kids, so brave, but when he is away from other little guys his age I think he begins to feel more of an outsider.  Plus they are up so late at night, it's really taking a toll on Ty.  He should be in a room with other little kids who are tired by 8PM.  This really drives me crazy!!

The good news is… we are supposed to go home tomorrow.  In all of my experience, the minute we walk out the door of any hospital Ty's mood turns around.  It's a sure way to get a smile.  As are presents - and he received an amazing present at the hospital tonight.  It was so special and it was the only time all day I saw him perk up, even if only for a short while.   
I only wish he would have shown a little more enthusiasm when Tom stopped by tonight.  At Sloan Kettering, Ty has four primary nurses… Rae-Ann and Sue during the day, and Daniel and Tom at night.  That just means that they have "first dibs" on Ty if he is inpatient when they are working.  It's a wonderful system that I wish more hospitals would adopt because it has allowed us as a family to really get close to Ty's nurses.  We learn so much from them and we really love them.  Plus, they totally watch out for our interests on so many levels and they help us to be better advocates for Ty.  The relationship goes both ways, too.  Sue told me that she was approached by a parishioner at her church up in Albany who asked if she ever saw a boy named Ty Campbell at Sloan because she had been following his blog.  "Are you kidding?"  Sue said.   "He's my love - he's mine!"  Then there was the time that Daniel stopped by the hospital on his DAY OFF to bring Ty a DVD on firetrucks.  Oh, and the reason he was off work was because his wife had just given birth to their second baby a couple weeks earlier.  Rae Ann stops by the clinic to say hello whenever she can, and Tom ALWAYS knows where we are and makes every effort to stop in before or after work if we are off the floor.  In fact, he was randomly wearing a "Ty" tee the night we ended up in Urgent Care… that's how connected he is J   I wish Ty gave him a shit-eating grin and a hug around the neck instead of a furrowed brow with silent treatment, but Tom totally understands.  It doesn't stop him from checking in on us.  THANK YOU ALL FOR BEING SO GOOD TO US!!  I just have to share this clip from a Johnson and Johnson commercial featuring our Tom that I just found out about.  I'm so proud of him.  Everything he is in this commercial is exactly who he is when caring for our Ty.

Not only are the nurses the best, but we have some great volunteers who come in to play bingo and make slime with the kids, the candy cart on Fridays, even the cleaning crew and the guys in the parking garage have become like family.  We have spent way to much time here, but we are grateful for all of the wonderful people who make our day to day encounters that much easier. 

Home tomorrow will be a dream.  I am about to pour a glass of wine from my stashed bottle so I can fall asleep at some point tonight among the noise.  It's so bad, I wish I had something stronger to fall back on but it's better than nothing.  Just kidding, sort of.  The truth is, Ty wakes up so often that if I ever dare to take something like a Tylenol PM, it would likely be a disaster because that would be the night I get only two hours sleep or something. 

I miss Gavin so much.  Speaking of Gavin, just look at this adorable face.  He is such a character, I can't wait to squeeze him tomorrow. 

16 comments:

  1. I love this post and so did my hubby. He's a murse at Children's Hospital in New Orleans and he knows every step of Ty's journey from my nightly blog readings. I hope that you guys have a wonderful weekend at home. Can't stop thinking about that sweet boy!

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  2. Such a wonderful post. I love you all!

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  3. OMG.. I just saw this commercial the other day on TV & I thought wow, this is a great nurse (however I thought he was just an actor). It's great to know that Ty is in such great hands. Cindy, I'm with you. Everyone needs to give a big shout out to all the nurses out there. It takes a special person to do what they do. God bless to all you nurse!

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  4. Cindy,
    It means so much to me that the gift I dropped off perked up Ty, if only for a bit. I gave it to the nurse at the front desk and told her that I did not want to intrude on your privacy, since I am a total stranger to you guys. She was very respectful to me as well as mindful of your privacy, and promised me she would deliver it hersef. I could see from her expression that she was profoundly touched by this gesture because of her total love for Ty. I also see what you mean about the nurses-a most beautiful blend of intellect and sensitivity.
    It was my total pleasure to shop for something that I thought Ty and Gavin would like, based on your posts. I threw in the size 6 to be safe, though might be too big (not sure, but the others looked small and they shrink) Likely Ty will be on to more "cool things" by the time he grows in to it.....
    Have a restful night.
    Kisses to our super hero
    All the very best,
    Susan

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  5. Thanks for the update and for sharing the video of Tom. I truly believe that nurse's do God's work. I am so glad thAt you have such kind and caring people taking care of your family. Here's hoping you have a restful weekend at home.

    xoxoxoxo,
    Maria

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  6. I am very glad that you are allowed to go home already, keeping in mind how big his surgery was! This must be a big relief for all of you!

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  7. Cindy,
    This is such a terrific post- First of the amazing news of Ty & the accolades for the nurses. These people are very special individuals.
    I am so happy that Ty is coming home. Hopefully, this time for good!!
    God Bless

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  8. These are the angels God send to care for us. I believe this call is given from birth and between your Dr's,nurses and God, NOTHING IS IMPOSSIBLE.

    Ty sending you warm hugs and kisses in your footsies from all of us here in Puerto Rico. Cindy make sure he gets them.

    Rae-Ann, Sue, Daniel and Tom: THANKS FOR EVERYTHING YOU DO WITH CANCER PATIENTS! MAY GOD BLESS YOU AND YOUR FAMILIY!

    Remember:
    If the only prayer you ever say in your entire life is 'thank you', it will be enough. ~ Meister Eckhart
    • Unselfish and noble actions are the most radiant pages in the biography of souls. ~ David Thomas
    • The only people with whom you should try to get even are those who have helped you. ~ John E. Southard
    • I would maintain that thanks are the highest form of thought, and that gratitude is happiness doubled by wonder. ~ G.K. Chesterton
    • I would thank you from the bottom of my heart, but for you my heart has no bottom. ~ Author Unknown

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  9. Gavin looks just like you!! Cutie!

    The video was sweet and I am so glad you have some sort of consistency of nurses in this inconsistent time y'all are dealing w/. That has to make all the difference in your hospital stay.

    I hope y'all do get out of the hospital today and get to go home and enjoy the weekend.

    Thinking of y'all,
    Jan
    Georgia

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  10. I am so grateful I came upon your blog. I've been following it the past week after someone shared a link on an MS support site. I have been so humbled and amazed reading your family's story! Your strength and courage is so inspiring.
    The first time I saw the commercial with Tom (a few weeks ago maybe?) I cried! I thought it was so precious and it's good to know he's not an actor:)
    Thank you for sharing your story and giving me another reminder to step outside myself and my struggles. I pray everyday for you, Lou, Gavin and Ty! I tell myself that if you can go through this with such dignity and grace... I can certainly face my issues with a better outlook!!
    Love and prayers to your family always:)

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  11. I saw that commercial last week and thought it was SO SO sweet. It is kind of cool that he is Ty's nurse and you all know him. All of your team definitely sounds like a supremely special group of people. Prayers as always being sent your way.

    Allie

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  12. I'm so grateful for your wonderful nurses! In all of this hell that you are living, and with all the questions raised about why? and God? and life?, the love from others is unmistakable. It leaves us with no questions. It is the answer.

    I am touched, teary and grateful to your nurses. Nurses truly are special people and I love them. Thank you Daniel, Rae-Ann, Sue and Tom! You uplift all of us with your healing hearts!!! I hope you know how much you mean to all of us on Ty's journey. Thank you infinity!

    And what an ADORABLE commercial. Tom rules!!!

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  13. so happy to hear you are going home already! enjoy the weekend! love and prayers to you guys!

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  14. I hope your son continues to improve and I would highly recommend you watch this documentary: http://vimeo.com/24821365 . Dr. Burzynski has been doing some terrific work and curing cancer (for good) in many of his patients using a method that doesn't have any side effects AT ALL. PLEASE watch the documentary ASAP because I don't know how long it will be online for free (they recently exteneded the free viewed period.

    I wish you and your family the BEST :)

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  15. I just want to say that I have been incessantly following Ty's blog. One reason being that I'm a mom myself and Ty just grabs my heart. I also went to Oneonta State. Plus, I avidly follow Ellen Whitehurst. Small world. Aside from all that I just HAD to approach you now just from this comment alone. My best friend from HS passed away years ago from leukemia, her name was Gina "Rae Ann". I truly feel she is Ty's angel and is protecting him just from reading the above. All my respect and positive energy goes out to you always as a parent, as woman, as a human being. Much love xoxo, Kim Olavarria

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