Roller Coaster Ride

Sometimes this journey feels a bit like a roller coaster ride.  I started the day yesterday full of hope and expectation, but ended the day feeling very discouraged.  Yet again, today things are looking up.

So far, everything still seems to be falling in place for us to get Anna home sometime this weekend.  The necessary equipment (wheelchair, feeding supplies, etc.) is being delivered to the hospital this afternoon; Anna has been "released" from the PICU and is on "general floor care" as of yesterday (but still in the same room because there aren't any other beds available right now); and her most recent incision is healing nicely.  I think we are just waiting for everyone's final stamp of approval.

However, yesterday Anna's spirit was empty.  She had been steadily improving and using lots of spunk and gumption up until Sunday evening.  Then her spirits sagged.  Because of the constipation pain and the new surgery, she was feeling very unmotivated to do anything.  When I talked with her yesterday afternoon about how she was going to be home this weekend, about how people are moving mountains to make this happen, her response was "I don't want to go home. I don't want to get better. I just want to lie in bed."  That was really hard for me to hear.

I shared Anna's attitude with her nurse yesterday and her therapists in the afternoon and we came to the conclusion that she needed to get out of her room.  This poor kid has been in some kind of (often miserable) pain constantly for the last 3-4 weeks and has spent the last 2+ weeks either in a hospital room, an operating room, an MRI or CT scan room, or on the way to or from one of these places.  Yesterday afternoon after her therapy session, her nurse and I took Anna on a "field trip" around the 4th floor of the hospital.  It certainly wasn't much from a normal 6 year old's standard, but it was huge for Miss Anna.  We think it perked her up a bit, too.

This morning after her therapies, she went on an extended field trip to the first floor of Children's, plus across the sky-walk to the cafeteria.  We have hopes that she'll get another trip in this afternoon when Kate and Ethan are around for a visit, too.

My mom is helping us out today at the hospital and told me that Anna seemed to get a bit of her determination back, that she was cooperating more readily with everyone and actually had the desire to do some of her exercises.  What a relief that was for me to hear!  As I told Anna yesterday, we will do all we can in our power to help her along this journey, but she is the only one who has the ultimate control of her body.  If she doesn't want to get better, she won't.

Most likely, her poor attitude was just another stage.  Each of us has probably gone through that hopeless stage at some point since Anna's initial diagnosis, but I know that in our family, we've moved through that point back to hope.  I hope and pray that Anna makes it there, too.

Time for prayers

Thanksgiving
Please thank God for the relative health of the rest of our family.  Both Kate and Ethan have had days here and there with runny noses and/or coughs, but neither has had any fevers or long-lasting colds.
Please praise God that Kate and Ethan are sleeping wonderfully at night right now; this means that when Matt or I take our turn sleeping at home, we can actually sleep well.
Please give thanks that my mom and Anna's nurse today have been able to get Anna up and moving around a bit more.
Please give thanks for the opportunity for me to be home with Kate and Ethan today; we've been having a nice, low-key day with lots of productive work.
Please thank God that everything is continuing to fall into place for Anna's discharge from the hospital and for our coming visit to Chicago.
Please give thanks that the only "tube" connected to Anna right now is her feeding tube!

Requests
Please continue to pray that we are home this weekend.
Please continue to pray for Anna's spirit, that she can move her attitude back towards hope.
Please continue to pray for wisdom and strength for Matt and me as we work to prepare Anna for the long journey ahead.
Please ask God to be with our family's adjustments to when Anna comes home, since it will be much different than when Anna was home before her surgery.

This morning as I was reading to Kate and Ethan, I came across a little toddler devotion that was very fitting to my feelings yesterday.

"To rejoice is to be happy.  But sometimes it's not easy to be happy.  When things go wrong, we can be sad.  But remember, God is there with us no matter what happens.  For that we can always rejoice!"

In the words of my Grandpa Colba ... "Rejoice!"