Decisions, Decisions

It was a fun week celebrating with my little Valentine.  I asked on Owen's Facebook page for prayers as we make decisions this week and I hate to be vague so I will elaborate a little.  Owen has been doing really well the last month!  His labs have been rock solid and his energy is pretty great.  His echo shows no change.. it's still bad, but not worse.  We have no idea what his coronaries are doing and the risk of intervention does not outweigh the benefits.  He has been listed for almost 9 months now and not a single nibble.  We have a couple friends here about the same size (different blood type) and they have been listed over a year (status 1A).  Rosenthal was on service this week and brought up the idea of outpatient Milrinone (like we did in 2013 while waiting).  We decided to think it over a few days and then sat down later in the week to discuss further.  After speaking with his AZ transplant team, Zangwill agreed to the idea of managing him at home.  It all sounds wonderful, but there are many things to consider.

If we leave the hospital on Milrinone, Owen will be dropped to status 1B.  This is a decision not to be taken lightly.  He is status 1A because he really needs a heart, but quality of life is also so important.  

If we do decide to try outpatient Milrinone, is it best to stay in Palo Alto at RMH, or to go home (to Phoenix). 

If we do go home, do we consider dual listing him at PCH.  With the drop in status, dual listing would open up our donor pool.  He are hesitant to make this decision because we won't know which hospital we would actually get an offer from.  They are both within the same region so it would go off radius to the donor hospital.  If a heart donor became available in the NW, it would likely be offered to Stanford and we would lifeflight him back here for transplant.  If a heart became available in the SW, it would likely be offered to PCH and we would drive there for transplant.  

We have many questions regarding UNOS allocation and what options we'd have post transplant.  Where to manage his followup care?  

There are so many decisions to be made and the ball is ultimately in our court.  Owen doesn't want to go home with a PICC line and Milrinone.  He just wants to get his heart and then go home.  I am taking his wants into considerations as well.  

Keep us in your prayers as we work out all the details this week and we will see how things play out.  I know the answer will be clear and we will know what to do, but right now it seems like I have no idea what the right choice is.  We have options.. GREAT options.. we are thankful for that.

Back to hospital life...

My cousins sent Owen this awesome Captain America replica shield that he LOVES!  Thanks Gavin!

Gma Monica had her dental student make Owen a giant bag of Valentines.  It came on the morning of the 14th and he loved reading through them all.  So awesome!

We have played way too many video games, but you do what you do to pass time here. Owen is mostly playing like this.  He is going to be a master yoga teacher one day.

A fellow Heart mom, Lisa (Cemaia's mom), made Owen this awesome "REGENERATING" shirt.  Since he always says he has regenerating abilities as his super power.  He loves it!!

We spend our days wandering the halls and Owen spent several hours playing Lego.com with the nurses the other day.  He loves to go out to the nurse's station and just chat.  He is Mr Social.  It's no wonder he doesn't want to leave. He has made friends with the nurses and loves them all.

We will be making a decision this week, so I"ll let you know.  I'll also have picture overloads because MY BABIES ARE ON A PLANE NOW!!! :)  I'm so excited to see my babies and Gigi monster.  Wish Carson could have come up this time, but he'll be here in three weeks.  Love you all for your support and kindness.  We can do this!!