Friday, June 24, 2011

A bit distressed

Discharge was a circus today. We didn't actually walk through the door at home until around 8:30PM and I immediately had to get Ty's meds ready. Then I had to clean out the refrigerator of all the rotting groceries that I purchased over a week ago but never got to eat - so sad!  One of my least favorite parts about returning home after a long stretch. 
Ty was very excited to get home, but it was so late and he was soo tired, he actually asked if he could just go straight to bed.  Within the last three or four hours he's been doing some strange neurological things, too, which has Lou and I feeling like our eyes are being held open with springs.  It's just so nerve racking to see him with tics like yawning weird every 30 seconds, or opening his eyes wider than usual.  We need to keep reminding ourselves that the MRI was clean yesterday (clean is such a beautiful word) and that we need to allow his brain to recover.  Ty's brain is doing a lot of moving around and readjusting, so we need to be patient. 

We just look at one another with such pain and anxiety.  The whole last week was so incredibly exhausting on so many levels, today was complete chaos, and we just needed to come home and let out a deep sigh.  That relief is being stolen from us as we watch Ty struggle to sleep.  It's just so hard sometimes.  I went upstairs and woke up Gavin for a few minutes just so I could hold him in his rocking chair.  That was the only real moment of peace I had all day.  Now I have to wait until at least 11:30 before I can give Ty his next dose of steroids, then I am going to sleep right next to him.  I pray the rest of the night is filled with peace and quiet.  I need to wake up for meds again around 4AM, but other than that I plan on sleeping as late as the boys will allow.  Goodnight everyone.  Sorry this wasn't a more cheerful post considering we are "home fwee!!" as Ty would say.  Tomorrow will be a better day :)

XOXOXOXOXOXOXOXOXO.  Have a great weekend.

8 comments:

  1. Praying you have some peace and relaxation tonight in the Campbell home. And, most importantly praying that Ty get's better and better and better!!!! I'm so happy you are all home!

    -Christina

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  2. I hope you all get some well deserved rest. So glad you're home and Ty is doing well. I'm sure the tics are temporary. His brain has gone through so much and I'm sure it's in the healing process. I hope your weekend is easy going and you gets lotsof smiles, laughs and cuddles from all your boys, that includes Lou. Saying prayers for you all as usual.
    Annette

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  3. Tomorrow will most definitely be a better day!

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  4. Cindy, don't ever apologize for anything you post. You have every right to say what you are feeling/thinking. It is because of your ability to put it all down on cyber paper that we out here are so in love with your family.

    Today will be a better day, as will the next one and the next one and the next one. SuperTy has alot of healing to do and with you and Lou and Gavin to help him thru I am sure that he will feel bedda soon.

    I continue to pray for just that. Healing, patience, strength.... I have all of you in my thoughts and paryers all the time. Have a great weekend and please give our little fighter big hugs and kisses from all of us.

    We love you so much,
    Elaine

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  5. I am very happy to hear that you guys are home. You deserve to be home and rest. Hope that you have a wonderful weekend.
    Love,
    Taciani

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  6. Hang in there. Better days(and lots of them) are on the way. Love and prayers.

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  7. I thought of you guys often today and hope it really was a good day.
    Love & prayers from Canada!

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  8. 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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