Getting Out

Owen is slowly starting to venture out of his hospital room.  It takes some serious negotiation but Mom always wins.  Part of the negotiation is that he has to walk a little and then I push him the rest of the way.  It's less an issue of cardiac endurance than it is just overall deconditioning and cramping in his legs.  He continues with daily PT and the more he moves the better he will feel.  The leaves are changing color and the atrium is a little escape from the halls of the hospital.

I finally got Owen dressed and off to hospital school today.  It was not an easy task but the thought of losing his iPad for the day was enough to get him moving.  We made it in time to work on some geography and then it was free play.  Tomorrow we will try to get there in time for actual learning.  We had intentions of making it to the afternoon session but got wrapped up in PT and lunch.  Owen did say "hospital school is kinda fun"...so we may have an easier time tomorrow.  He did say he feels out of place and feels like he might not understand something they are learning and there are some uncertainties there.  Kevin has been his teacher before and he is fantastic so I know Owen will do great once he feels comfortable.

Nurse Jay brought his Millenium Falcon drone in for Owen to play and of course that got him up and moving around the room!  Nurse Justine tried to get him to Pokehunt but he was feeling lazy by 5pm.  We aren't used to daylight savings because Arizona doesn't ever switch so by 5pm we are feeling like its 10!  

Last night we had the Elders (Kip and Harrison) come visit and hang with Owen.  He laughed a lot and had a great time with his "Star Wars Buddies".  

Overall, we are hanging in there.  Owen is in a sweet spot with his Milrinone.  His kidney levels were elevated on Sunday so we increased fluids a bit and I added another 450 cals to his gtube feeds.  I feel like all I do is calculate his Ins and Outs for the nurses.  I am going bonkers in this room and find myself wondering how I did this for 100 days before.  Taking it a day at a time and praying for our next miracle while giving thanks for today.  

Kam has dance concert week so she is rehearsing until 6pm every night and then concerts Thur and Fri.  This will be the first dance concert I have ever missed and I am bummed.  I'll watch the video and make Carson FaceTime from the concert so I can watch in real time. 

Tate entertained Logi this afternoon and It looks like he loved it!  I'm so grateful for all the love that Logi gets while I am gone.  He cried while on FaceTime tonight and kept saying "ma ma ma ma". Bless his heart.  Soon we will be reunited.  

We are making the days count and missing each other like crazy!