Home.

We made it home safe. We woke up on Saturday morning and went out to breakfast in Palo Alto, then wandered the Stanford shopping center checking out all the cool playhouses they had up for auction. Then headed to Sprinkles to get Kam a surprise cupcake. After packing and a little relaxation, we were off to the airport.

I have to tell you about one Southwest employee that is phenomenol!  He recognized us when we landed in Palo Alto on Friday.  Not only did he grab the oxygen from me and escort us to baggage claim, he offered to carry our luggage/carseat to the rental car location across the street. Then he even packed up my rental car for me and was so kind.  When I offered him a rather large tip for all his help, he said "no, it's my pleasure."   He recognized us because he was the porter that helped us with the wheelchair when they lost our stroller during a previous flight a few months ago and remembered Owen.  When we arrived at the airport on Saturday, my hands were so full, and he was there ready to help again.  He got Owen's stroller tagged, got our preboarding pass and was so helpful!! Owen calls him his "helper friend, Todd".  I need to find out his last name and write a letter into Southwest on his behalf, he is so wonderful!!! We need more kind people like this in the world.  I love good people.

Our flight home was smooth.  Owen loves his in flight snacks and iPad.  I can just kick back and do my Sudoku puzzles and read. 

We arrived home by early evening ...I unpacked, bathed Owen, made sure bellies were full... and then I went out with a few of my friends for a quick dinner.  It was a great end to a long day.

On Sunday, we went to see Ironman 3 with my family and  it was amazing!!  Both kids loved it a lot and you all know Owen has a special place in his heart for all Superheroes!   Since it was Cinco De Mayo, it was the perfect excuse to load up on Mexican food for dinner. Then we came home to make homemade Sopapillas.  Carson and I watched a movie and the Kam played Wii with Owen until bed.  Again, another great day!

It's Monday again, and there are only 2 1/2 weeks of school left!!  Owen is counting down the days to having Kam home from school.  We have a busy few weeks planned and so many activities packed in.  I want to get a lot done around the house and we are making some tough financial decisions.  It's going to be stressful making things work in two different states, holding down two different households on one income.  It will all work out, but we need to have a plan in place.  I honestly feel like everything is going to fall into place and work out.

We are waiting for Owen's therapists to arrive for the day.  He is looking so big today!!

I just want to say thank you again for all your prayers, kind words and support!!  We really do appreciate it!! :)

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!!

Palo Alto

Owen and I made it to Palo Alto. After a very early wake up call, we made it to the airport by 4:30am. Owen was mighty cheerful and silly this morning! We had breakfast at the airport and boarded our flight. Thankfully, Daddy is off work today because Kam woke up with a really red eye and a massive earache. Daddy took her to the peds (on call) and they diagnosed her with an ear infection, which she has never had before.  We are sad for Sis.

We made it to our hotel by 9am and they let us check in early!  We unloaded our junk and made our way to the hospital for a quick lunch before Owen's echo.  Of course, Owen decided upon Sushi, which he ate all the crab out of. 

Owen has had his echo, we played with the hospital train, we are just waiting now for his 6 minute test, then doc visit.  It's 12:45 and we have a long ways to go.  I'll update more in a bit. :)