Monday, July 28, 2014

9:30 AM update

Ryan and I both wheeled Miles down the hall and kissed him goodbye at the "kissing corner" where parents say goodbye to their kids.  It was tough, but I think it's been comforting knowing that this HAS to be done in order for him to live, and we're just ready for it to be over.

So far we've gotten two phone calls since 7am. The first one was that all "lines were in" and they were starting the operation.  The main lines are going through his neck and groin, and those are the big ones that regulate just about EVERYTHING for him.  Then of course they have regular IV's too.  That process took about an hour, which is typical. It also can be challenging on people with Trisomy 21 to get all those lines in.  Especially the neck one, as his is shorter.

About a half hour ago we got word that he was "on heart and lung bypass." That meant, a machine is keeping the rest of his body alive (organs, brain, etc.) while they have the heart stopped and are working on it.

Someone from the actual OR calls on a phone and we talk to them.

The surgeon estimated about 5.5 hours for surgery, not including the time it takes to get him in his NICU room and transfered care teams.

The anesthesiologist told us all the risks, which we knew, but did state that since his heart is being operated on, he has a 10-20 times higher risk of having complications from anesthesia than other children. BUT, he did say, the risk is so minimal for the other surgery candidates, that 10-20 times higher isn't quite that bad.  Eh, it still seems bad.

Miles essentially has one valve that should tbe two, so they are cutting that and repairing it.  But because of where the surgery is taking place, it'll affect the current or electricity (ok..not the right terms there, but Ryan and I are spacing out..and sleep deprived.)  of how the heart and it's rhythms work. So..there is a chance, that after a few days, his heart doesn't get the right rhythms back and will need a pacemaker.  The other risk is that the valve reconstruction isn't strong enough, or "good enough" and he'll need a complete valve replacement.

He'll be sedated anywhere from 24-48 hours depending on how he's doing.  They'll take the breathing tube out first, which I'm glad he'll still be quite sleepy and drugged up for. I don't think that's pleasant.  He'll be on strong pain meds, thank the Lord.

We'll post pictures later, as there are lots of people who would like to visit if they could.  Couple more hours to go.....

Here are a few pictures of our surgical waiting area. We've set up camp to say the least.

A very small section of the waiting area that we've taken over. 

They have phone charging stations, multiple tvs, coffee/tea, computers, and blankets and pillows for families. 


  1. Prayers still going your way!! You guys were my first thought this morning! I asked my grandma Char and your Grandma Ruth to watch over him, I know they are! Hugs.