An Exhausting Day

This has been an exhausting day. Owen had a good night last night and we had plans to extubate him this afternoon. We decided to go down a little on his Epi and start Milrinone as well.  Those were the big changes for the day.  Around 11am, Owen spiked a fever of 103.5 and his HR shot up to 200bpm.  His BP stayed stable at 80/58 so that was reassuring.  We quickly got him IV Tylenol and then had to follow up with Motrin (which is usually a transplant kiddo no no) to get the fever to break.  We sent off cultures and did another chest xray.  There is a small amount of junk in his chest but it's really thick so we would bag him and suction him and he would clear out the junk that just rests on the bottom of the breathing tube.   He was still on Cefepime (antibiotic) and we started Vanco as well.

We went back up on his Epi, clearly he's not ready to tolerate the change and we turned off Milrinone.  Maybe another day. 

Most of the day I was anxious, drained and just feeling on edge.  We finally got things under control by around 5pm.  He is now resting with his HR at 160, good BP, sats are at around 94 and he seems comfortable.  His respiratory rate is still a little high at 45, but he is coming down.  We are doing around the clock IV Tylenol for now to stay on top of his fevers.  He loves to be surrounded in ice packs and his room is the coldest room I have ever been in. 

He has been a total trooper and this mama is ready for a LONG nights rest.  Owen should sleep comfortably with his Melatonin on board.  He had a long day as well.  His poor little body struggled and fought so hard.  It's nice to see him resting comfortably.  Child Life brought in a flat screen tv on a cart so he can watch DVDs and play Wii when he's ready.  They have a huge booklet full of every DVD imaginable and you just call the library and they deliver it to his room.  He seems to really enjoy that.   Just another day in the CVICU.  He has been on the transplant list one week now.  :)

After things mellowed out, I felt comfortable enough to step out with the other kids.  We went to The Melt for dinner because I am a grilled cheese and tomato junkie.  Then we headed back to the hospital for some cuddles in my quaint closet on the unit.  Kam worked on a poster for one of our dear heart buddies Sebastian (also HLHS and waiting to be listed for transplant). 

Logan thinks he runs this joint and knows where everything is now. He walks up to the elevator and pushes the button, he is the first one off the elevator when the doors open.  He loves to run to the cafeteria, or to the train set or to the play room.  He just thinks this is a great big playground.  He made friends with a few Arabic kiddos that don't speak much English.  He hugs the little girls and loves to play with their hair.  They love it equally.  Making friends during these hard days makes things better.

I took  plenty of time to get my snuggles in.  I am going to miss this the most.

Prayers for a quiet and restful night for all of us.  Tomorrow is a new day.  A better day.