Day 6 on the Transplant List

Another productive day in the CVICU.  Owen had a good morning. He was febrile so we sent off cultures of every line and his secretions from this intubation tube.  His HR elevates to 170, I surround him with icepacks and we give him IV Tylenol.. then things tend to stabilize.  The preliminary cultures have come back and his secretion culture came back gram negative (maybe pneumonia).  They don't seem too concerned and he has been getting some hard core antibiotics all day so hopefully it knocks out any infection brewing. 

He has had a quiet day overall.  We watched Antman, he got two EKGs, an ECHO where we saw good flow through the stent in his coronary, he said goodbye to his cousins and spent some time with Daddy and Uncle Rustyn.  We were going to pull his femoral line but (thanks to Carson) we realized we don't have enough access to keep a heparin free line and we need to draw an accurate heparin level everyday and need a clean line to do so.  Shout out to Carson for being the only one between ALL of us (docs, nurses, ect) to catch that one.  So we leave the line for today and we'll have to figure out a plan in rounds tomorrow. 

We started to wake up his belly a little and ran Pedialyte at 2ccs an hour all day and he seems fine.  We switched some of his transplant meds to his gtube.  We really want to decrease the amount of meds running through the lines.

We did a five hour sprint off the ventilator and he did fantastic.  His numbers actually looked better.  We are all super cautious about extubation because his heart is so sick and we will be requiring more work of him.  It's such a fine balance.  We have his fluid balance almost exact (not neg or pos). 

So overall a good day. His nurses are phenomenol and that's what you get when you are the critical child on the unit.  We get lots of visitors from his team that drop in to say hello, even when not on service.  Everyone loves Mr. Owen and he had them all extremely worried last week.  I can see in their faces when they look at the monitor and look at Owen that they are pleased at his progress, but worried about him.  Never underestimate this boy.

When I walked in this morning I saw his little Darth Vader socks and Capt America blanket.  He is just my little boy. 

This morning I went to the hotel to shower and spend a little time with Kam and Logan.  Logi just snuggled and cuddled forever.   Being away from my babies is one of the toughest parts of this journey.  I know it's what's best for Owen.  There is Facetime and lots of visits but Ill miss the daily cuddles and kisses.  Kam is the best big sister he could ask for and he has the best Daddy.

I left for a while this afternoon while Daddy and Rustyn stayed bedside.  Kam, Logi and I have a normal hour at Costco.  We ordered contacts, bought a fuzzy blanket, a few towels and things I"ll need for the upcoming months here.  It felt like life was normal, even if just for an hour. 

I talked with Ruben at the RMH and we go way back. ;)  They aren't taking new houseguests until at least June 16th because they want to get all the current residents to the new RMH in the next week or so.  I am sleeping in a closet with a hospital bed in it most nights.  I'm working with insurance to keep covering the hotel room (right next to the RMH) so I have somewhere to shower, unwind, eat breakfast and relax.  Everything is working itself out. 

We continue the wait....