Route 5

We are completely disoriented.

Wednesday: seemed both comforting & productive. We all really believed she turned a corner.

Today: cards...visit (http://www.st-johns.org/visitor_info/cheercards_home.aspx) to send cards to Regan. Apparently they are printed out in a little gift shop here in the hospital & delivered by a little-old-man-volunteer. After he had made multiple trips to our nurse's station, Chantell overheard him ask, "Who is this girl?" After the nurse explained, he said, "We've never had this many messages for one patient...we barely get this many for the entire hospital!"

It's amazing to think how many people are impacted by this little girl...who has never spoken a word. You may not realize it, but this blog is read by people all over the world (it would be encouraging to read your responses/prayers)...now that is some community...and it gets the attention of the hospital workers & doctors around us. They all wonder, "Who is this girl? Who is this strange community that supports her family?"

We hope that they eventually ask, "Who is their God?" Because we all know that as much as we really do love Regan, this is also about God. We're watching & supporting Regan for His name's sake. We really want to see God's power in the weakest places, to experience it and to praise him for it....don't we? Don't you? Isn't that what you're looking for here? We all desperately need to see God's presence in Regan's life. Our faith may depend on it.

4pm: I arrived @ the hospital w/ the older two kids. Regan looked about the same as yesterday...disappointing, since I was hoping for more obvious progress. But she was alert, singing & laughing again.

6-10pm: she sent every monitor alarm into a fit and bounced her numbers around like basketballs. I've never seen her chest heave like that for so long. She seemed somewhere between panicked & excited. And I was scared.

6:30pm: Doctors have talked to us for years about DNR (do not resuscitate) orders, encouraging us to consider the limits of medical treatment we were willing to use. But this week is the first time they have asked us for an answer. They did it on Monday and again just now. We requested some changes to her treatment, hoping to settle down her system. (Do we even know what we're talking about?)

8:45pm: Chantell and I had to decide whether she should go home w/ the kids as planned or stay w/ me just in case. Should we have the kids camp-out in the family room? How are you supposed to make those decisions? And how are you supposed to live with their consequences?

We tried to watch the numbers on the monitors & find some trends. Finally, we just had to go w/ our gut...we decided that they all needed rest, and that Regan would probably pull through the night.

9pm: I'm divining every blinking light in the room for some sign that we made the right decision.

11:30pm: Right now she seems as peaceful as she's been in awhile. Her numbers look better. She sounds better. She's breathing a little easier. The changes we made 5 hours ago are paying off...so I'm going to bed.

Tomorrow?: I honestly have no idea what tomorrow holds. I don't know whether to anticipate progress or pain. So I have to rest in Psalm 33...read the whole thing when you get a chance. But take this w/ you for now: "We wait in hope for the Lord; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you."