Oct 10, Breaking new ground

11:00 pm. Really the only thing today is her walking.  Everyone involved in her medical care has become aware of her extended travelings and there are a few loose ends that need to be addressed.  Basically, Lindsey is the first Berlin patient in this hospital to walk as far and for as long as she does.  Right now, they don't have a policy or protical in place if something were to happen while she was outside the hospital (LPCH) boundaries.  So when we wander down to the fountain, or the Stanford side, or down all these mystery hallways we (I) keep finding, they need a procedure in place to address the various things that could go wrong. (And there are plenty of things that could go wrong, remember she is on mechanical support.)  Stacy and I are very okay with this. It's kinda fun to be the family that is helping LPCH come up with new procedures. We went through this same process when her walks were longer than a half hour and we were getting all those crazy Berlin alarms, and they didn't know how to fix it.

What Stacy and I appreciate is that they are addressing this issue.  They are NOT saying, 'Sorry, you can't leave, it's against our policy'.  They don't have any policy, and they are working to get one worked up that will allow her to go.

They also understand how well she is doing, and keeping her 'locked' up in the children's hospital side is not good for her spirits. These adventure walks have been really good for her moral.  So in report we will be following up to see where they are at, so we can bust out of here (on a walk).

Oh but my plot is even darker.  I want to be the first family to take their child off the entire hospital grounds.  Meaning, load her up in the big red suburban and go to the RMH, or the mall, or a park, or church, or somewhere. Now we are breaking new ground.  But I have learned from my Dad and from 15 years of marriage, if you want something bad enough you need to have patience and you need to package it just right.  Of course we would have nurses, monitors, EMTs, backup equipment, her blanky, and anyone and anything else that needs to come along to keep her perfectly safe.  But wouldn't that be so cool.  Stand by for that one.

Also, they addressed her 'leads'.  She has a pretty bad skin reaction to the heart monitor leads on her chest.  Her poor chest is covered with sores, scabs, and a rash from the months of leads stuck to them.  Since she's doing well, they want her to leave her leads off during the day and check her heart rate every couple of hours or so.  Again, no other Berlin patient has done that. 

So these are good problems to have.  Just as we get all this stuff figured out, something crazy will happen and we will be shaving.  But not yet.

Lindsey and our family continues to pray for Ruth Frieboes, Chloe, Tristen, Shawn Stockwell, and Ricky Anderson's family, and others.

Again, thank you for the love, support and comments.  We read and re-read each one.

 They are doing an article in the 'LPCH Nursing' magazine about Lindsey, her journey, and the nurses that take care of her.  They took a few photos for the magazine but first they wanted to do a little 'make-over'.  She felt pretty special.