Crossroads

This week I have been laying low, doing a lot of thinking, and networking with other heart moms that have been where we are in the transplant process.  I feel like we are hitting a crossroads.  A point where a decision needs to be made to allow Owen to continue waiting at home, listed as a status 2.  Or making the decision to start giving him an IV medication, Mirlinone, that will help give his heart a little rest.  Milrinone is magical and can really help Owen feel better as a bridge to transplant.  When a patient is on Milrinone, it also bumps their listing status to 1A {top of the list}. 

There are pros and cons to each path we take, but I feel like we are almost to that crossroads and the ultimate decision is mine.  It a heavy burden to carry and I want to make the right decision.  I know the transplant team relies heavily on my accounts of Owen's daily activities, struggles and mood.  I am the one that manages his heart failure on a daily basis and so I am the one that would know best.  It's just a hard decision.

Yesterday, we got outside and spent a while at the park. The weather was fantastic at 70 degrees and sunny.  Owen was on the swing for a good hour.  Kids came and went.  I watched them run around, ride their bikes, roll down the grassy hills, and climb all over rocks.  My heart told me that it's time.  It's time for Owen to get his chance at really living life!

Owen swung high, he lost his flip flops about a million times, he talked to the other kids that came around.  He is very competitive so when a little girl was swinging higher next to him, he had me push him higher.  See the oxygen leash in the picture above.. he can't go as high as he wants because of that.  Ugh.  Everything has a limitation.  Some days he looks so tired.. like this picture.  Yesterday wasn't one of his best days and the day before that was an emotional one for him.  He said "my heart is tired."  But I don't know if it's his 5 yr old temperament, or if it's really his heart. 

My sister brought Liv to meet us at the park and she sure loved the ducks!! 

Owen didn't do any walking yesterday, just hung out in his stroller, which isn't unusual.  He had fun throwing bread and watching the ducks fight over each piece. 

Here is the picture of our new LDS temple from the park. It's almost complete.

Last night was Kam's Spring Orchestra concert.  The 7th and 8th grade orchestras did a phenomenal job!  This is just the 7th grade!!  I loved when their teacher stood up and said 98% of these kids signed up for 8th grade orchestra next year.  So cool!  They also had the high school orchestra perform a couple pieces for us that were so awesome.  Owen fell asleep half way through, but it was so relaxing and quiet I could have done the same thing.

Last night Owen sounded congestion.. sigh.  His sats were in the high 60s while sleeping, so I was up worrying.  This morning he was back to his baseline, and has had a good morning thus far.  He looks better today, more rested, and is playing Skylanders.  We are headed to the park in a bit, but I wanted to update today.

I have spoken with some wonderful heart moms.  The best I can do right now is to prepare for anything.  Owen should be activated on the transplant list sometime next week, assuming he has no congestion and his RSV is gone.  I am spending our weekend getting the car serviced, cleaning house, organizing closets, and donating toys.  I really want to have the house in order before our March 14th trip to Stanford in case we do decide to stay for a while.  I want life to be as "normal" as possible for my two loves at home.

Happy March!!