Nope, No Improvement Yet

Gage has been mad and frustrated all day.  For the few seconds I dozed off in the chair next to his bed, he was yelling under his mask at me.  Really not liking he CPAP. The power was off at the hospital today for 12 hours, so there was no TV available.  I brought my laptop knowing full well it would be needed.  I was able to get Gage calmed down and we started watching a movie together.  Then the IV team came in and said they were going to start a PICC line.  The calm ended and he was instantly mad again and crying.  I feel so bad for him.  Here he thought he would get through the transplant and he wouldn't need anymore of these things.  But, here we are adding them back slowly.

He was quite a trooper for his PICC line, we watched the original ET for it.  Such a classic movie.  After the PICC line was placed the doctors reevalulated Gage's fluid status.  He had only peed twice and each time was only 100 cc.  We are a long way from peeing the 700-800 cc's the doctors would like to see.  They decided to place a chest tube, this time in the right side instead of the left, to see if that would help take the fluid pressure off.  With the PICC line, the doctors can measure Gage's pressure directly without having to go to a cath lab.  Wednesday these numbers were 16-18 (remember, they want them below 10) today they were 24-27.  A significant enough of a change, they also decided to start Milranone.  Milranone is that wonderful medicine that all of our children have been placed on when first diagnosed with heart failure.  This medicine helps the squeeze of the heart.  Gage is not having difficulty with the squeeze of his heart, just the huge amount of fluid that they can't get ahead of.  They are hoping starting the milranone will help the heart and he will start peeing.

I had the discussion with the doctors of "so then what?" If these don't work, what is our worse case scenario so I can prepare himself.  IF he can't keep his oxygen level up, then the next step would be putting him back on the ventilator.  IF they can't get the fluid off and his kidneys get really mad, then the worst case scenario would be dialysis.  So, we will continue to wait and pray that he milranone helps before we take on the worst case scenarios.

The kids are away at friends for the night, Jason is with Megan at her prom and I am at Gage's bedside.  We are all where we need to be at the moment. I reiterate Jason's last message of the gratitude we have for so many people willing to help us out.  Bring meals, run kids around, let them stay at your houses and many prayers in our behalf.  Thank you so much, we are truly blessed.

Gage with his newest chest tube and picc line.