September Came in with a Bang

September sure came in with a bang.  I wasn't prepared and things have been a bit crazy.  Owen and I just got back from Palo Alto so I'll keep this short and sweet.  It was a busy couple of days and I am still processing all the information.  His biopsy results came back 1B rejection again, which is still "mild rejection" but serious enough that we have to take action.  Seeing that little red typing on his medical file stating "acute rejection" was just a little punch in the gut. 

 

I'm going to start with adorable pictures because that's what I am focusing on.  We started our Wednesday off with an 8am clinic, followed by Echo, a mini psych session with our favorite psychologist and then headed down to the Ford Surgery center to get checked in to preop.  Owen signs himself in now... Mr Independent.

He is always ready for a trip to the cath lab, which is good because we will be back in four weeks instead of 12.  Sigh. 

My favorite part of the day was heading out to dinner with these heart mom friends.  Continue keeping Cam in your prayers as he is still fighting with everything he's got!  He is on dialysis and fighting a few major infections.  He opened his eyes for me and gave me a wicked grimace, but the little hand squeeze was enough to show me he isn't giving up anytime soon.  That little guy has more fight in him!  See Brayden there in the corner next to his mama?  He has been waiting for his heart for 3000 days and counting... pray that his antibodies will go away and stay away... we can't wait to see him start to feel better. 

We were so excited Harrison came by to visit with us at dinner.  Harrison and Kip came to the hospital and gave Owen a blessing when he was so, SO sick.  They became fast friends with this little funny man and Owen just adores them both.   Pretty sure Owen was pulling his "hidden blade" out. 

Good news from the day was that his function looks great and his pressures were actually amazing (3 and 8).  His heart is happy... so why is there rejection!?!  It's so confusing. His team is coming up with a game plan.  No more steroid weans for a while so those puffy cheeks are here to stay.  His levels have been stellar, so we are switching up his anti rejection meds and going back on Sirolimus.  Sirolimus can help prevent the development of coronary disease in transplant patients and we used it from Jan to May of last year when he progressed from mild to severe, so I'm not super optimistic.  It also causes wicked mouth sores in Owen.. like 20 at a time.  Praying he doesn't have the negative reactions from the meds this time around because he's finally loving food and we are so close to ditching that feeding tube!

Thursday morning was my feedback session from the eight hour testing he did with Neuropsych.  It was overwhelming and so much information.  His intelligence is right on point and his IQ is smack dab in the average range.. so that is the awesome news.  I'll do a long post on this Monday because it's also our IEP meeting at the school and it will help me process it all.  I like to go into the IEP meetings with a clear head and ready to advocate. 

This weekend I am going to focus on hanging out with these three and focusing on the good!  Clear my head, process all the new info and get back into life on Monday.  Today I am going to catch up on my Chemistry labs and get a little ahead of the game before Anatomy starts soon.  What better time to jump into college right?  Anyone else need a vacation?!

Happy September!