Tuesday, April 30, 2013

Days 12 & 13, Post Op Fontan (April 29 & 30)

Both days have been busy for Eli.  He's been in a very sour mood since surgery and doesn't smile much.  If he does, it's clearly by accident.  He cries as soon as anyone walks into the room.  The boy is done.  He's been through this before, he's too smart when it comes to the hospital routine and he's not in the mood for it.  So we were pleasantly surprised when he took a liking to his student nurse on Monday.  It was a tall guy named Josh who has a two year old son as well.  First of all, Eli prefers male nurses to the plethora of females who take care of him.  Secondly, Josh knew not to push too hard, but how to get the things done he needed to.  Thirdly (and maybe most importantly) he had pictures on his smartphone of his son and could talk to Eli about him. 

Whatever the reason that Eli was in a semi-tolerable mood Monday, we were happy.  Eli even requested a wagon ride in the morning.  As we made the circle around the hallways, we stopped at the big window and showed him the play area outside.  Yes, we're on the third floor, but there is a playground for patients who are allowed to use it, weather permitting.  Monday was a great day to be outside and Eli said yes when we asked him if he'd go out. 

We brought him back to the room for pants and shoes and took him out.  Josh accompanied us and brought a towel for the leftover rain puddles on some of the items.  Eli stood outside the wagon and started crying seconds into the stand. 
Crying because he had to stand

We asked him what he wanted to play on, thinking he'd point to the little Playskool slide.  But no, our son points to the huge climbing tower and wants to go up.  Remember, this is a child who hasn't stood more than a combined minute since surgery and in addition to not being able to pick him up under the arms, we also have to be careful of his chest tube, carry a telemetry box (heart monitor), and deal with his "portable" oxygen tank on wheels (portable my foot, the thing is half my size).  But, Daddy & Josh scoop him up along with his previously mentioned necessities and climb up a level.  He just wanted held and enjoyed feeling the breeze and sunshine.  I snapped a couple pics of them up there then Josh came down and took a picture of the three of us.

Hanging out on Peyton's Playground (that's not the name of it, just what came out as I typed!)
When we went back in Eli wanted to keep riding in the wagon.  We made a couple more circles and then took him back to bed.  He was a tired little monkey. 

The rest of the day was pretty uneventful.  We did a couple more wagon rides and he had a therapy session which he hated!  How dare this woman bring in a play mat and toys?!?!  She left the mat and a bench in the room.  The bench is to encourage him to sit on it and make it easier for him to bring himself to a standing position. 

Monday night he had a slight fever (100.3) but it was taken care of with a dose of Motrin.  I was concerned because he hasn't had much fever despite the staph infection.  When we talked to Dr. Belcher about it Tuesday morning, he wasn't too concerned.  He said it's common to have a higher temp in the early evening hours, he liked that one dose of Motrin lowered it, and that it wasn't that high to begin with.  He said he'll keep watching him and see if it continues and under what circumstances.  He's a very calm, laid back guy but also knows lots of details about Eli and we're comfortable with him.

Tuesday morning was a little rough for Eli.  Bryan left to come to Washington so he could hang out with Zachary and go to his ball game.  Eli seemed to know Daddy wasn't just going to the store and he was VERY out of sorts all morning.  We took four wagon rides today!  It was difficult for me at first because I wasn't used to navigating the wagon and the oxygen tank, but we're pros at it now.  Unless I have to open a door.  After the first wagon ride we sat on the floor and played with some toys on the play mat.  A dog came to visit (Eli was not a fan) then PT came in.  I told her everything Eli had done by then and he plainly told her he wanted bed.  She said that's fine but he had to walk there.  With some assistance and a lot of protests, he walked to a chair she had placed by his bed.  Then she helped him into the chair, to a standing position, and into bed.  He did a lot of it himself which just showed us he can but it takes more energy than he's willing to give.  After a brief nap he had lunch.  He's tired of being in bed so he tried the big chair. 

He wasn't sure at first but he ended up doing really well in the chair.  He ate a decent amount for lunch too.

After another wagon ride (#2 or #3?) he got a bath.  He REALLY needed one and to have his hair washed.  He screamed the whole time but the nurse and aide worked very quickly and he smelled so good when he was done. 

I wasn't much help because I was laughing at him and taking pictures.  

He snuggled in my arms on the couch for a while before going back to his freshly changed bed.  We took another wagon ride while waiting for supper to arrive.  He only ate 1/2 a dinner roll for supper but he was so tired he fell asleep on my lap.  With Bryan gone, I'm getting a lot more snuggle time!  Eli also enjoyed some candy from his nurse Steph.  There was a chocolate sale in the lobby today and she brought me some Peanut Butter Meltaways.  (I told you they take good care of us here!)  Eli saw me eat one and starting pointing while saying "Choc!"  He ate two by bedtime (he asked for more but mean Mommy thought that was enough!).  He ate 8 grapes before bed and is sleeping now.  Hopefully he's tired enough that he sleeps well tonight and feels rested in the morning.  He's been restless for a few nights now and needs some quality sleep.  He had a low fever again tonight about the same time, but we'll just see what Dr. Belcher says in the morning. 

Zachary and Bryan had lunch together today and did some errands around town.  Z was excited because he got two suckers at the bank!  His game went well and he had three hits :)  They were enjoying frozen pizza for supper and going to sleep upstairs in the big bed.  Bryan will take Zachary to school in the morning and head back up to Indy.  It was hard on him to leave Eli and I know it will be hard on him to leave Z.  It's tough being torn between our two perfect boys ;)

My friend Katie updated her blog today about Caleb.  May 1 will be the six month anniversary of their admission to Riley and the start of their wait on the transplant list.  They are a very positive and faithful family, but that's a lot to ask of anyone!  They have seen three or four children who were admitted after Caleb receive new hearts while they're still praying for their call.  Of course they're happy for those families, but it's hard on them and isn't getting any easier.  Please include them in your prayers.  Just when I'm feeling weary because we've been here for 15 days and counting, I think of their endurance and realize I have nothing to complain about.  Pray for them to be energized with hope and for the call about Caleb's new heart to come soon.  Luckily, he's been pretty stable for a while now so pray for that to continue. 

Thank you all for your prayers for us and our friends.  We see that the power of prayer is incredible and inspiring.

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