Cardio, Psychology, and the Best Sis ever

First of all.. thank you for all your prayers and support... I am feeling better about things.   Some days it's such a reality check and I realize I probably need that big dose of reality now and then.  Owen has been an emotional roller coaster this past week.. mostly happy, but also can be so grouchy and then sad.  I have been reaching out to other families to see if they have advice about play therapy.  With all he's been through his first five years and with transplant in his future... I think it's time to get a psychologist on board to help him through things.  I think I am a pretty great mom and raise some pretty fantastic kids, but I can also admit when there are some things I just don't have expertise in.  I want Owen to have a therapist that knows how to work with critically ill kids.  He doesn't have behavioral issues at all and his communication is stellar.  I think he just doesn't know how to deal with some of his emotional feelings at times.  I have no idea the impact that all of these procedures will have on him in the long term nor how his mental health is affected by all the hours he spent on bypass, his low oxygen saturations, ect.  So if you have any advice on looking for a therapist.. please share!  I am working on getting some referrals from cardio and his peds office and I'll start there.  I just want to make sure we stay ahead of the game.

Today Owen had a cardio appointment with our local transplant team.  An hour after we got there, they began his echo and the echo tech was my least favorite ever. She was really short with him and not friendly at all.. she took forever to finish up the pictures and I hope we can avoid her in the future.  Yikes.  After we had been there two hours, we finally saw our nurse and she did a quick assessment.  She seems to think all is well and didn't seemed concerned at all.  Then Dr J (our new cardio locally since Stock can't see transplant patients) came in and said his echo looks the same.  He asked me if I knew what RSV was.. obviously I said yes.  Then he said Owen just needs to have the full four weeks to get over it and then we will see how he's doing.  He didn't assess him and spent maybe 45 seconds in the room.  It was rushed and I just left feeling like it was a waste of time.  Owen was so frustrated after 2 hours of waiting that he just had a complete meltdown in the office so I didn't get to ask any of the questions I had, nor did I feel they had the time to answer them.  I just don't get the 'I'm confident in my team' feeling when I'm here.  It was not a good visit. 

I am glad they consider Owen stable.. and hopefully he is.  His body may just need a few more weeks of healing.  On a positive not.. check out his sats just now!!!  So much better than the 60s where they have been the past two weeks!

After cardio, we met Daddy for lunch at Four Peaks.  It's always fun to see my hubs on his lunch hour and Owen was just thrilled to be anywhere but cardio.  We ran home, did a few chores and were out the door to pick up Kam.  I really need to do more updates on my big girl.  She is thriving in Jr High.. continues to get all A's.. has a ton of really great friends.. dances about 8 hours a week in the evenings...and is the best Sis ever!!  Last night she got home from dance at 9:30 and we sat in the kitchen talking about every detail of her day, the girls at dance, and laughing.  I love having a daughter, especially this girl.  She is so funny and sweet, but she isn't afraid to call you out and tell you how it is.  We just finished filling out her 8th grade registration for next year.. electives of choice ended up being Orchestra and Art.  She is going to knock the socks off her art teacher.. she's amazing!!

I'm off to throw dinner together and get the girls to dance.  Owen and Daddy have a "boy movie night" planned, so I should really go to the gym.  Or just sit and watch my favorite girl dance at the studio.  Life is good.

 

Until tomorrow.  Our team at Stanford has a transplant meeting in the AM and they'll call so we can discuss Owen.  They will be thrilled to hear about his increased oxygen sats and hopefully agree to give his body more time to get rid of this RSV junk.  Who know a small respiratory virus could wreak so much havoc.