Happy Easter

Happy Easter everyone!  Wow, we just finished reading the latest comments on the most recent post and I couldn't help but feel that Steve's story is so much bigger than just him and our family.  This story is about all of us (including every one of you who reads this blog) and your personal stories of struggles, challenges, and the inspiring stories of events in your own lives that you refer to in your comments.  I love that we are all connected and uplifted by one another.

After arriving home yesterday, all we wanted to do was relax but of course there was too much to do.  We had to organize all of our supplies from the hospital and attempt to establish a routine for medications, dressing changes, mouth and pin care, and Steve's feedings through the feeding tube.  Then the home health care nurse came to evaluate Steven, help with any questions about his care, and determine what supplies we needed and didn't have.  It was a bit overwhelming.  I was very apprehensive about changing the bandages on Steve's wounds and neck where his trach tube had been but luckily I managed to complete the task without passing out.  After all that, I still had to put the kids to bed and prepare for Easter morning.  By bedtime, I was exhausted and foolishly thought I would sleep like a baby.

I gave Steven an Ambien through his feeding tube to help him sleep and got in bed.  As I laid in bed, listening to Steve breathe, thoughts began flooding in and I couldn't quiet my mind.  I listened to the pump of the feeding tube which triggered memories of a year and a half ago when I had the same sort of set up at home for myself after my cancer surgery.  The rhythmically timed squeak of the pump brought back so many painful memories and emotions that I laid there feeling devastated for Steven, what he's been through and what he still has to endure.  Then I tried to imagine how it must be for him only being able to breathe through his nose and the gaps in his teeth.  I clenched my jaw and imagined what it would be like having to sleep with my jaw wired, only being able to breathe through my nose.  I got so clausterphobic thinking about it that I broke out in a sweat and felt totally freaked out.  I think it caused a slight panic attack.  Needless to say, I couldn't fall asleep and all I wanted to do was listen to him breathe so that I knew he was still alive. 

I must have fallen asleep eventually because Janie came in a 6am telling us that the Easter Bunny had come and left Easter baskets.  I asked her if I could sleep a little longer before we went to see exactly what the Easter Bunny brought and she agreed.  What a great kid! Eventually the other kids woke up and dragged me out of bed at 8.  Steven stayed in bed because he hadn't slept very well throughout the night and he was barely able to lift his head off the pillow.  Later in the morning, the nurse came to draw Steven's blood and after she left, I taped plastic around all Steve's bandages and he took his first shower in almost 3 weeks!  Afterward, we all hung around the house, cuddled and watched movies, and enjoyed a very relaxing Easter Sunday.  It was a great day.