The nurse who arrived couldnt get the G tube into Kristin either. There is a blockage about an inch down. I tried again a few hours later.
Kennedy is getting darker when the episodes begin and is staying darker longer. She is taking longer to recover as well.
So we are feeding her sugar water to ease the hunger pains. We are told there really isnt any pain involved. Carol has gone on a hunger strike almost completely. I was able to make her eat 1 chocolate cookie and drink some coke.
So as I write this Kennedy is sleeping to my left and Carol is thinking of taking a nap. K is pink as this page and looking just fine. She has a slight wimper to her breathing, but it is easy - beleive me.
Her last episode lasted over 10 minutes and she went without breath for at least 5. Her heart nearly slowed to nothing or slow enough that I was going to check using the stethescope. You wouldnt believe how dark she gets and then the gasps.
If you are considering following our path with your child realize this - she very well may stop breathing and turn dark blue for minutes at a time. She may do this many times before she finally passes. The final episode may take 1 hour to complete. You will start hoping that this is the last time. You will hate yourself for feeling this way. You will want to see her stop struggling and gasping for air so that she can make it to heaven.
Then she will violently gasp and cry or whine very pitifuly and begin to wake up and gain color so that you can love her for another hour or so. And you will wait for the next time she is going to turn the darkest most death grip looking blue you have seen in your life.
10/11/2005 7:59:53 PM
Comment by kathy.curfman<at>bigcenter.com
My thoughts are with you all every day. I know you are thankful for the time you are getting. She is beautiful!!!
posted @ 10/12/2005 11:37:45 AM