Let's talk Botox and Buttons

I was under the assumption that we would have a normal, relaxing summer.
If you think my normal days are anything but normal well then...

I having been discussing Botox.  Botox with Jeremy, friends and doctors.  Botox is NOT for me.  It IS for Brayden.  Botox is used to relax muscles.  Under sedation, needles of Botox are incerted into the muscles.  This is something that is being discussed for Brayden.  As he is getting older, he legs muscles are getting tighter and tighter, causing a bit more difficulties.  We visited a Brain Injury Clinic at Children's, at the clinic we meet with a Physical Medicine Specialist, a Physical Therapist and Neurologist (who happens to be Brayden's primary neuro) all at the same time, in the same room.  They looked over Brayden and talked with me for over on hour.  Lots of information, too much to share right now.  But Botox is on the table for discussion.

Then the following morning, I am doing Brayden meds, flushing the feeding tube lines, when I realized the button for his j-tube (intestine) was coming out.  I have changed the Mic-Key button a few years ago when Brayden had only a g-tube.  I was not sure if I could or should change the j-tube since the intestine is more sensitive than the stomach.  Of course, it was Saturday morning and there is no one to call so I tried the on-call GI doctor but did not get through.  So I called a friend, we discussed Botox and she gave me a refresher on changing the button.  I hung up the phone, got all the gear ready and I changed it.

Now take a step back for a moment.  I am at home, pulling a tube out of my son's intestine, leaving a large gaping hole and then I slide in a new button.  YIKES!  When I thought about having children, I had no idea this could be a possibility.

The tube works just fine...I checked it just about every hour that day. 

Yes, then we proceed on to our regularly schedule activities, like parties, pool and running errands.  All right after a major medical discussion and changing out tubes from holes in the body.  Then people ask, "What did you do today?"  Me, "Not much."