Day 98 - Status 1B

Sorry I haven't posted this weekend.  I have been busy trying to make arrangements for discharge.  Meds require authorization, medical flights need to be scheduled in AZ, and I'm packing up 14 weeks worth of "stuff" into two suitcases.  It doesn't matter because we are two days from freedom!!  Owen can go outside without a gown (I'll still make him wear a mask).  The plan is to discharge Thursday after Carson and the kids fly in.  Owen isn't allowed to stay at the RMH due to his isolation status, so we have a hotel around the corner.  We will have a weekend as a family enjoying the amazing Palo Alto weather.  Owen and I won't be able to go home until Tuesday after his clinic visit.. but then we are HOMEBOUND!

Owen continues to do so well!  His neutropenia completely resolved itself which is amazing!  He is eating, tolerating feeds and gaining weight.  He seems like he is back to his baseline when we came in 98 days ago.  It's all just incredible!  Since he is doing so well, we dropped his listing status to 1B on the transplant list.  He still won't have any competition because there is no one listed in his size and blood type anywhere in the Western US.  I love that his blood type is B positive.. it suits him. :) The other great news we got was that his antibodies are still very minimal and there are NO voids on the transplant list.  With the Pseudomonas and blood transfusions we were nervous that those antibodies were going to spike.. another blessing.

The hospital librarian made his day when she showed up with the newest Diary of a Wimpy Kid book that she specially ordered for Owen.  It came in the nick of time.  He has read the entire series this summer and we can't wait to round off our stay with the final book.

Owen's appetite is making me so happy!  He can't stop talking about all the "non hospital foods" he is going to eat when he breaks free.

I caught a nasty cold this weekend and have worn a mask 24/7 (even in my sleep) to keep Owen safe.  I am over it now for the most part and will wear a mask for another few days to be safe.

Mr. Logi caught some nasty virus and had a tummy bug with fever this last week.  We had labs drawn to make sure he didn't have elevated WBC (indicating an infection) before they flew up this week.  He was awesome or labs and only whimpered a little but they got him in one little poke.  When I called the lab to let them know Logi was coming in they were so thrilled to hear from me.  They hadn't seen Owen in three months and we are usually there at least once or twice a week.  They feared the worst and I was so happy to tell them we'd be back for labs soon. Logi was fine and kicked his virus!

I can't wait to snuggle my other kiddos and sleep in bed with my husband.  Logi has been missing his Mama! 

We are so blessed!  I've read back on my blog posts from those days in May and hearing the words "we are losing him.. there isn't much we can do." I remember signing the consent to take him to the cath lab knowing that he was most likely not going to come out alive.  The pain... I am just so grateful.