Day 40.

Today was busy and routine.  I got Owen's WiiU system all hooked up to the hospital tv and only needed a little help from the hospital engineer.  Then he sent me to Target to grab the new Lego Star Wars WiiU game that just released and that'll keep him busy for a couple days.  Grandma and Grandpa kept him busy playing card games, board games and Star Wars trivia.  I should have taken pics, but there is always today. ;)

I pushed his feeds up a little more and he's not vomitting so I'll keep pushing.  I'd love to get him off TPN completely.. and we already cut him down in half.  So there's that.

His mood is good most of the day and then he has little moment of total HULK mode.  Words go flying and they aren't very nice.  I usually just take a step back and let things fizzle out.  Sometimes the docs of nurses will push to listen 'right now' and he is just over it.  I understand with people listening to me and poking at me all the time I'd be a little irritated too at times.

He got a package at the RMH today and it had some pretty cool legos and this light up lantern.  It didn't have a card as to whom it was from.. so THANK YOU!!!  He loved lighting up his room tonight and watching the stars on the ceiling.  It's like camping in his hospital room.. genius.

Back on the homefront.. the girls sent me pics of Logi messing around on snapchat... LOL.

It's another day in paradise...

Laughter

We are finding our groove in our new hospital room.  Owen likes his morning quiet.  I scrub his room from top to bottom, get him in the bath and then replace all linens on his bed.  Then he climbs back in bed to get hooked up to all new leads and probes.  The nurses and docs all come in to do their assessments and then round on him.  We aren't rocking the boat or making too many changes right now. 

Nutrition is coming along.  I have him at about 40cc an hour which is a litle over (30cc is 1 ounce).  His goal is 70cc an hour over 24 hours so we are halfway there.  It will take a little time and we may not hit our full goal, but his gut is tolerating it.  After not eating over the past 5 weeks, his little tummy is finally getting stretched.  He still gets nauseated a little but I'm trying to push him wihtout making him uncomfortable and he hasn't puked at all.  So all good news!  He even wanted to eat chicken noodle soup the last two nights.. so progress there.

The best news of the day was that Grandpa Todd and Grandma Monica drove up for a quick weekend visit.  They brought the gross Jelly Bellys (stinky feet, moldy cheese, ear wax) so Owen could trick his nurses and friends. He laughed so hard yesterday when he got the nasty reactions.  Of course Owen won't eat anything chewy  or sticky so the jokes on us.  Anything for a belly laugh!

 Child Life brought him another giant racecar and he discovered that one controller will control both cars at once.  So you can imagine the crashing of cars and laughter that ensued yesterday afternoon.  He is really having a great time most days... until he is tired.  When he is tired and napping or sleeping at night it's all hands OFF.  He turns into the hulk and so we just let him be and don't wake him for anything.  I covered up all his pumps last night with a giant chucks pad to make the room super dark.  It's amazing how bright the entire room is with all those med pumps.  He not only slept through the entire night (aside from my 2am meds and BP check), but he's still sleeping at 7:30 this morning.  YAY!

You would never know his heart was so sick by looking at him or what he has endured the past five weeks.  It's just incredible.

 These three munchkins will be here in five days!! Not that I'm counting down or anything....

Germ Defense

We are settling into our new room on the floor.  I ended up sleeping on the sofa in Owen's room last night and it was a LONG night of pumps and alarms going crazy!  We got the kinks worked out today.  Owen was up and ready to play this morning.  He wasn't too thrilled about getting an echo and was a stinker when it was time for PT.  Then he crashed for about 3 hours!  He was so tired.  He woke up a little more chill and was thrilled that Child Life bought him Pop The Pig (he requested it last week and since they didn't have it, she ordered it for him).  He played with Allison for a while and then settled in to watch a movie.  We got his med lines all changed out this evening and I feel wiped out.  I will head back to the RMH soon so I can get all my laundry caught up and get a quick night's sleep.

We have family coming over the next week so Owen is thrilled.  We chatted in rounds about precautions and the issue is not so much him spreading germs around the hospital.  Since his absolute Neutrophil count is WAY too low, we need to keep infection away from him.  So we are on reverse isolation.  Anyone that comes to visit has to be 150% healthy and wash/scrub/sanitize like crazy.  My hands are raw from all the handwashing I do and I always wear gloves around the little guy.  Lets call it Germ Defense.

I'll post more tomorrow but I am falling asleep on my laptop.  As soon as Owen has drifted off I will smooch him and head out.  He has had phenomenol nurses on the floor thus far.  Praying for stability until he gets a heart.