Dec 28, Doing much Better!

Stacy here
I get to update the blog tonight.  Jason slept at the RMH last night and slept so well that I thought he should have another night to get caught up on the sleep he lost the night before.  Lindsey also slept very well. She slept all night and woke up in a VERY good mood this morning.  She had her favorite nurse Shannon and her pain was at a 3-4 (out of 10).  Lindsey acted much better too.  She was her spunky little self again.  Thank you for your prayers and concern. Hard to believe those prayers don't help!

We went to the fountain this morning (Lucile Packard fountain not Stanford), and played with the marshmallow shooters and bubbles.  It was a little cool outside, but the fresh air felt great.  She was allowed to go to the playroom today.  Yesterday she couldn't because they wanted to make sure she didn't have anything contagious or infectious.  After the playroom, it was time for the inevitable... REPLACE THE FEEDING TUBE.  It is really funny how she suddenly finds every excuse in the world to put off these procedures.  I don't blame her, I would too.  This time the experience was much better.  It took two tries, the first try was with the tube barely in but not advancing down her nose.  The tube sat in the back of her nose for almost an hour.  The nurse would try to advance it, but it kept hitting something blocking it from going to the back of her throat.  Shannon would stop and wait until Lindsey told her it was okay to try again (which could really take awhile).  But, it just would not advance.  A second nurse, Tracy, came and tried, but could not get it to advance either.  They went for a smaller size and it slid right in.  We were very happy when it was over, Lindsey especially. 

Lindsey is very excited for her birthday tomorrow.  It appears that she will be 9 years old when she receives her transplant.  That would be a wonderful present for her!  Jason was asking the doctors if there have been any 'offers' that they couldn't take or has there truly been nothing.  They admitted that there have been at least a few that they could not take.  As Dr. Hollander said," Lindsey is very stable, which allows us to be more picky about the heart she gets." We do want the "perfect" heart for Lindsey and are willing to wait for that heart.  We are grateful that she is in a situation that they can be picky.  Sometimes if the patient is really in the need for a transplant, they will accept some that will work, but are not ideal.  So, we will, as patiently as possible, wait for that "perfect" heart.

 Shannon, Tracy and her mother helping Linds relax through the feeding tube. Not an easy thing to do.

 Greater love hath no nurse than this.