Forty-eight hours

It's been an interesting 48 hours. Here is where we are now:  The surgery was successful but it's taking a little while for Jonah's body to respond to the fontan.  Things are going a little slower than we (me and Katie) expected.  But the doctors are telling us the things that have been going on, mainly him not being able to keep any food down, are not abnormal. 

We are still in the CVICU tonight, Sunday night.  We've been telling ourselves we are OK with that and even though moving to the 10th floor would be good - moving there too soon would be bad.  So we can stay here as long as needed.  And actually Jonah said tonight that he loved it here.  It was random.  I think he was confused.

Yesterday was the worst day since the surgery.  Last night Katie and I were flat out drained.  I think we changed the sheets on his bed three times.  He just wasn't keeping anything down.  He's getting medicine and fluid through the IVs but we're also giving him some medicine orally.  He's used to that because he gets that at home 3 times a day.  He's actually a pro at taking medicine through a syringe and has never had a problem with that at all.  But then after he kept vomiting yesterday he started not wanting to take the oral medicine.  He would vomit right after taking the medicine.  So he thought it was the medicine making him sick.  So all day today I've had to hold his head still while Katie pushes the medicine in his mouth with him screaming the whole time. 

Also yesterday we put him in the wagon and pulled him around the floor. 

Monitors, chest tubes, and everything in the wagon.  It was good for him to get out of the bed and out of this room.  He was kind of glazed over from all the medicine but he said he was enjoying it.  After about 8 laps around the floor he was ready to go back to his room.  Since everything was unhooked from the wall we had him sit in Katie's lap.  It was such a beautiful moment.  The whole day he was unhappy.  He was tired of being in the bed.  He wanted to go home.  He was physically worn out from throwing up so much.  And then I put him in Katie's arms and 3 foot cherub came into our room and winked at me as he brandished a harp. 

OK, there was no harp.  But it was beautiful.  Right before my eyes I was seeing one of our greatest concerns about this surgery being blown out of the water.  We were really concerned that we would lose some of the attachment and bonding that had occurred in the last four months just due to the trauma of the surgery and recovery.  Honestly at one point we asked ourselves if he would even remember us after he woke up.  But it's all been proven to be worthless worry.  As soon as I put him in Katie's arms he stopped crying.  He was so peaceful.  He fell asleep pretty much immediately.  My thoughts at that point were not "he's our adopted son".  They were more like, "My son needs us right now and thank you God that we can comfort him and love him."

I guess one of the frustrating things about yesterday was that even after the wagon and the time in Katie's lap his stomach was still not well.  But after a long afternoon and night he did finally go to sleep and so did we. 

It would be very spiritual if I could tell you I prayed for hours asking God for help and begging him to just do something.  The truth is I was tired and all I said was, "God, please help us.  We need a breakthrough."  I think I am beginning to understand more about how the Holy Spirit prays for us when we do not know what to pray. And I'm also very thankful for people who are praying for us this week.

This morning Jonah slept a good bit.  He got a couple doses of morphine last night and that took some time to wear off.  Then they took another chest tube out this morning and gave him more morphine.  Yay.  So it was kind of a sleepy Sunday morning.  When the doctor's made the rounds today our doctor said the goal was to get him up and moving today.  So we took another wagon ride.  This time we went out away from the unit and into the hospital lobby.  He was OK with it but definitely didn't get that excited.  We also had him walk just a few steps.  Apparently the fontan doesn't really kick in until he gets up and starts moving around.  Thanks for telling me that 5 days after the surgery.  Actually I don't think he could have handled walking before today.

We had him walk from the bed to the wagon.  And a funny thing happened on the way to the wagon.  In transit he needed to have a BM. (ha ha, when have I ever called that a BM..)  Katie and I were both supporting him so he didn't fall.  The nurse was trying to keep all the tubes and cords where they needed to be and keep them from getting hung up.  All while we were trying to get Jonah on an adult sized handicap portable toilet.  I think all the emotion of the previous day got to me and I got the giggles.  Then we all got the giggles.  It was a needed comic relief moment.

After the wagon ride we just hung out in front of the room in the hallway.  We were trying to keep him from going to sleep.  So while he sat in the wagon Katie and I tried to entertain him.  We shot helicopters at each other with this toy that my work friends gave us.  Then we got Miss Charlie drunk by spinning her around and around in an office chair.  She's doing well.  Then I built nothing in particular with some blocks while Jonah looked at me like I would rather be laying in my bed.

Also today, he sat in my lap.  No cherubs or harps but it was a good thing for both of us.

He slept there for a half hour or so. 

We thought we were making big progress today because for dinner he wanted chicken noodle soup.  And he ate it and kept it down.  But only for an hour.  Things were going great.  He was talking and asking for more soup.  We were giving it to him slowly to keep from running into a problem.  Then we were going to get in the wagon again and come back and go to bed.  But as soon we got him up he started getting sick. 

We still took the final wagon ride but clearly with no wind in our sails. 

I still think we made progress today.  Oh, one other thing is tonight they took out another IV.  So he has his right hand completely free now.  Even though he got sick tonight, we did have him up more today and got him moving.  So that was good. 

Here is something awesome: some folks at our church got together and wrote out a lot of encouraging Bible verses on construction paper and sent them up here.  Even though we haven't put them on the wall (because we keep thinking we'll be moving to another room soon) I have read them all and I am very thankful.  Thank you guys.  We are not walking this journey alone.