The sleeping situation

Since Ty has been home, he has been sleeping in our bed.  Even though he wasn't a good sleeper before the diagnosis, he still started off in his own bed at bedtime (and often ended up in our bed at some point in the night). 

Now, because he is hooked up to a feeding tube every night, he has to be monitored because he is at risk of aspiration.  In addition, he still gets two IV antibiotics throughout the night (one from 10 - 11PM and one from 4-5AM) so we prefer to have him with us.  I'm sharing this information because it has become a big issue for us lately.  Lou and I have a queen size bed and we can't all fit anymore because of Ty's IV and feeding tube.  These days one of us sleeps with Ty and one of us sleeps in my office on a crappy pull out bed.  It stinks!  We desperately need to upgrade to a king size bed so we can all enjoy sleeping together as a family again until Ty is all better. 

In fact, Ty is still awake with me in bed as I'm trying to complete this post, and he keeps teasing me by pressing the buttons.  I promised I would be quick and I would post a picture of him and his brother.  Enjoy this photo of Ty sharing his ice cream with Gavin just two weeks before his diagnosis.  It was taken during our family vacation at Schroon Lake.   

Comments

  1. Colleen RosenSeptember 25, 2010 at 11:24 PM

    Love the pic and all the good news. The boys look beautiful and happy.

    ReplyDelete

Post a Comment

Popular posts from this blog

Anything but cancer

Image
Cancer is not welcome here.  It can never, ever, ever, ever, ever come back.  As I mentioned yesterday, Ty has been showing some physical symptoms that we haven't seen in a long time.  Please, God, don't let it be cancer again.  Anything but cancer. I spoke to Ty's doctor first thing this morning and he believes the increased weakness we are seeing on Ty's left side is not related to new cancer growth - but that doesn't rule out the possibility.  He feels that Ty is suffering from spasticity, which is becoming more visible now only because Ty is getting stronger.  As Ty's muscles begin to regain mass and tone, the neurological weakness on his left side is becoming more noticeable.  This spasticity is likely permanent, but also treatable with continued therapy.  When I spoke to his physical therapist later today, she agreed that it would explain what she is seeing, and then she reassured me that walking again is still a highly...
Read more

Our baby is finally free. Rest in peace Ty Louis Campbell.

Image
Ty Louis Campbell is gone, but his story continues.  This is our promise to him.  His impact on the world around him gives his short but inspirational life such meaning.  His soaring spirit will continue to fuel a fire in our hearts, and strangers around the world will continue to fall in love with the little boy who fought so valiantly.  The little boy who hurt so much, but maintained a bigger, brighter smile than the healthiest of children.  Ty never did break his fever.  He never really woke up.  Not until he decided to leave this earth and fly freely among the clouds.  At that very moment, he was awake.  He had returned to Lou and I to say goodbye.  To say our hearts are broken would be like saying it tickles to have your stomach ripped open with a spoon.  I went to bed last night with so much worry on my mind, but I was able to fall asleep because I was calmed by the fact that in his semi-conscious s...
Read more

Our aching hearts

Image
My face is swollen.  My eyes are heavy.  I have been crying for what feels like an eternity.  But in between my tears, I have an overwhelming sense of freedom.  Today we were told that there are no more treatment options for Ty.  That his MRI Saturday night shows progressive lepto-meningial disease in three different areas.  Lou and I decided against surgery to fix Ty's shunt, and I am finally free from feeling responsible for whether or not he lives or dies.  Ty is in God's hands. No matter how many times I swore that I leave Ty in God's hands, I was always clinging onto him with every ounce of my being.  Researching.  Fighting.  Begging.  Doing anything in my power to find a way to save him.  Finally, I have exhausted my options and I am letting go.  I may be kicking and screaming, but I am still loosening my grip because I know that I have to.  We have tried so hard, for so long....
Read more