Officially Listed for a Heart!!!

I don't even know where to begin as it has been an exhausting day.

First of all.. Owen is OFFICIALLY LISTED FOR A HEART!!!

I got a call around 4pm from Stanford letting me know that they have the air transport ready and they have him listed as a status 2!  I have many mixed emotions knowing that a heart offer can come at anytime and he will be on a plane, headed to the OR and given a new heart.  It seems so surreal.

Ok.. now onto today. We received a call around 1pm that a bed would be available for Owen in the CVICU at 2. We headed over to Phoenix Childrens and got through the admitting paperwork.  Owen was given one of our long time favorite nurses all to himself.  She was on top of things, efficient and he had a great time getting hooked up to all his leads.

The nurse tried her best to place an IV and she first used the J-tip which shoots Lidocane into your skin to numb it before sticking him.  It was too much pressure and his vein collapsed and that was our first IV attempt.  Bummer.  He was hysterical and sweaty, so we gave him an hour or so to recover.  During that hour, we placed the numbing cream on his arms and called the IV team to come down.

They placed the IV quickly, but then had to draw 20ccs of blood so they had to squeeze his arm forever to get enough blood out for the labs.  Longest 2 minutes of my life!!  Nothing, and I mean nothing, is worse than holding your child's down to a bed while someone is poking them and trying to tell them it's "almost over".  It never gets easier.

On the bright side.. we got a good IV in and just in time for his "Big fat juicy hamburger with fruit" to arrive.  Owen was so happy, talked to all his old nurses as they came to visit and we watched a movie.  An hour went by while we waited for the Benedryl and IVIG to come up from pharmacy.

Owen wanted me to take a picture of his IV to show everyone how horrible it is.  He doesn't sugarcoat it!  The nurse administered his dose of IV benedryl, which is just a pre med for IVIG.  Owen had a full on hallucination and was wigging out!  I have never seen him act that way and he couldn't focus on me, was irrational and so the nurse ran to give the ICU docs a heads up.  I just cuddled him in bed and sang familiar songs and eventually, after 30 minutes, he drifted off.  He hasn't had Benedryl, especially via IV, since he was an infant so I can't compare this reaction to anything.  Ugh.  I'm just glad we were in the CVICU where he was being closely monitored. 

We ran a slow saline flush over an hour to clear out his IV before administering the IVIG.  I want to make sure we know if he has any side effects, if it's the IVIG or the Benadryl.  Geez. 

Owen's nurse also showed me his chest xray from today.  Look at how crazy enlarged his heart is!  That is just a single ventricle and it takes up his whole chest cavity.  The cool part is his coils.  Owen has had many collaterals that form which is basically the body's way of rerouting blood flow to the body.  Do you see the giant one off to the rigt that has a million coils in it?  I found that interesting.  You can also see his sternum wires down the front of his chest.

So it's 8:50pm and we have about 11 1/2 hours of IVIG left to go.  This was a first time run so we are hoping for no nasty side effects.  We will be back in two weeks for more which we are both already dreading.  So far his nurses and the docs in the ICU have been really great!! 

I'm off to catch some shut eye.  Owen's blood pressure cuff goes off every 20 minutes, his IVIG beeps every 30 and the nurse has to use a flashlight to check his IV site and eyes (for puffiness) every 30.  This is going to be a long night.