Weekend Update

Hello Everyone,

Thank you all for your continued support and prayers. I apologize to those of you who want more frequent updates. Please keep calling, it helps keep us on track with this blog; and it's good to hear from you.

This was a busy weekend for me as Jackie caught some kind of bug, so she couldn't be around Grace, and I had the other three kids. Jackie stayed home and the rest of us were at the hospital and Ronald McDonald house trying to keep from getting whetever Jackie had.

So, an update on Grace...

It is frustrating, after stringing along a few good days and forward progress, to reach a plateau. Grace needs to get off of the ventilator so that she can exercise her chest muscles and stomach on her own. She gets down to barely any help from the ventilator and does just fine. But, the instant they try to stop, she stresses out; her blood pressure shoots up, her breathing gets irregular, and they have to put her right back up to higher settings. It was, and continues to be, a roller coaster...

Any time she gets agitated (for just about any reason: being moved in a way she doesn't like, suctioning her tubes, flushing her lines, or not being able to 'watch' Discovery Channel with dad) her CO2 output rises. When this happens they have to 'adjust' the ventilator modes and her amounts to find an equalibrium where she will stabilize. Then the game of slowly reducing her begins again.

She got a new arterial line on Friday. This time in her left foot. It took several tries... so in addition to the large line above her ankle, there are now several bandages around her foot as well. Because of the new line she is responding much better to her medications. The old one was "falling apart" (not really, but one nurse said that it wasn't very useful anymore).

The new central line allowed her to have the IV's removed from her left hand. Which is now black and blue with bruises, scabs from the little pinholes and peeling from her swelling and decrease in fluids. However, now she has the ability to move her little hand and takes great pride in doing so. I like to believe that every time she is raising her tiny fist she is saying "I Rule" ala Kevin Spacey in American Beauty. The kids just think she is looking for a 'high five'.

Grace is now off of all of her continuous feed medications except the blood thinner Heparin. Everything else is just given to her as needed. Mostly she wakes up and is visibly upset with what is going on and the nurses have to sedate her with Morphine.

Her jaundice is much better. They have taken her off of the gallstone medication which was increasing her jaundice.

The people from genetics were in today running tests. I am still trying to find out what the tests where for. I do know that we won't get any results for several weeks.

She is taking 17cc's of food per hour. Her goal is 19cc's. But, just like everything else, she gets so incredibly close and then decides to test all of our patience.

So, all in all, she is doing her part and we're doing ours. The next big hurdle is getting her off of the ventilator. Keep sending your prayers to Grace...

Thank you all again,

David