The Plan!!

So the verdict is in... we are on coming home!!! 

We had a long talk with Owen's transplant NP and Cardio (Dr Rosenthal).  Dr R agreed that Owen is definitely at a "peak" and is as stable as he is going to be.  His energy levels have increased and his growth spurt over the last month helped too... 2lbs gained and 1" taller!  It is not a matter of if, but when, he will begin to decline. 

Dr R felt very comfortable with Owen coming home for about 4-5 more weeks, but he was just as happy with Owen staying put and starting Milrinone therapy.  Since he is doing so great and the end of school for Kam is approaching, he agreed that we should go home and enjoy the next 4 weeks together as a family.  Enjoy watching Kam's dance recitals, orchestra concerts and award ceremonies. 

At the end of those 4-5 weeks, we will come back and without discussion, and begin Milrinone therapy.  He isn't going to get any better than he is right now, so we will enjoy this "peak" and then get the ball rolling. 

We discussed the details of Milrinone therapy and Owen will be inpatient while we figure out the right level of medication for him.  He will discontinue his oral cardiac meds while on IV meds, so there will be some fine tuning.  The positive to the Milrinone will be Owen feeling great!!  We will most likely be able to stay on Milrinone outpatient at the Ronald McDonald House, and Owen will be bumped to status 1A (top of the transplant list for priority).  He will also have almost 10 months of time built on the transplant list, so even if another child is listed as a 1A, he will take priority since he has waited so long. 

I am hopeful that a heart will come soon!! :)

On another note, Owen was THRILLED to do his 6 minute exercise test!!  He asked every 5 minutes when he could take "the big test."  The electrophysiologist, (Jeff) or "Jack" as Owen called him, first took his blood pressure, oxygen sats, and HR.  Then we set up two cones and Owen had to walk back and forth for six minutes.  He made it a competition and had such a great time!  He took a few breaks, his lips were blue and he was clearly out of breath, but he finished!!

Jeff took notes the entire six minutes based on visual observation and after the test was complete, we hooked Owen back up to the Pulse ox, checked his HR and his blood pressure.  His sats took the biggest hit which wasn't surprising.  His sats when we first hooked him up were 42%!!!   After about 30 seconds they climbed to 46% as you see in the picture below.  Then they climbed back up to his baseline of 75% after a few minutes.  So he recovered well.

Dr R. said he has adapted SO well to his anatomy and continues to adapt.  Owen is going to be such a rockstar when he has 100% oxygen sats and a healthy heart.  He's going to be unstoppable!!!

So that's the plan!!  We are staying at the hotel in Palo Alto tonight and will fly back to Phoenix tomorrow.  We have so much fun planned for May and we plan to LIVE IT UP!!  Kam will come back to Palo Alto with us in June and enjoy the summer with us.  I can't complain about the amazing weather and Daddy can come up often!! 

Thank you for all you for all your prayers!  Dr R. said this was the best decision and he feels 100% comfortable with our plan or else he wouldn't be considering it.  He is such a phenomenal cardiologist and we are so lucky that we have him on our team!!