Heart Talk

Owen loved his echo, tolerated his EKG, chatted with the nurse during his blood pressure.. but he broke down when we stripped him and place him on the scale.. how dare we!

During the echo, I could see that his function is just blah. His valve leakage is severe. There is good news... it's the same... not worse. I asked her at what point they consider heart function lousy enough to admit them and start them on milrinone (IV heart med). She smiled at me and said... "I've seen kids on decent doses of milrinone with heart function far better than this". Thanks, I feel better. We love our echo techs and I thank them for being honest.

Dr. Stock reviewed the echo and said his heart looks the same. Then he gave me the icky face that means it's the same ... as in not pretty. I then asked Dr. Stock (cardiologist) the same questions... at what point would we need to admit Owen and start him on milrinone. He smiled. He said when he starts to look pasty, vomitting, poor kidney function, fatigue... some of the signs that Owen is showing right now.

We are being optimistic ... together... and saying that he is only showing these negative signs because he has a bug he is trying to fight. This is what we need to pray for! If he doesn't show signs of improvement by Monday, I have to call. You know what that means. (Another admission to ICU)

We're still waiting to hear back from UCLA regarding Owen's antibody levels. We'll do more labs on Monday to check the PRA's (panel reactive antibodies) again. We're praying that they are lower so that we know the rituximab (chemo) is working.

Our next visit with cardiology is in 20 days... another echo... another evaluation. We won't see Dr. Stock until then... because Owen IS going to be better by Monday and he's not in advanced heart failure... right Owen?? Right??

Sick and Snuggling

It's official... my arm is going to fall off.

Owen continues to puke. And BOY, does he pick the perfect moments. There's no better time then right after a nice long shower, all over the clean sheets. Or, when we're running out the door to pick up Kamryn from school and we both get soaked. Did I mention how much I love to do laundry?!

We enjoyed another day... snuggling. Reading books, singing songs, trying to make him laugh. He just doesn't feel good. He wants to lay on me, head over my shoulder, rubbing my arm. I'd be lying if I said I don't LOVE it.
He just spiked a fever. Poor guy.

We have cardiology tomorrow afternoon. It'll be nice to know what that heart of his is doing. We're praying that his function is ok. I don't expect better... but not worse. He hasn't been himself. Sick, tired, won't eat a thing.

Excuse me while I go cuddle my sweaty hot little man.

Rag Baby

Owen still isn't feeling like himself. He has spend the last few days like a rag doll, flopped over my shoulder. If I put him down for even a second, he cries and says "ma-ma-ma-mmmmmaaaa". My heart melts and up he goes, over the shoulder.
My house needed some serious help today. Food stuck to the floor like cement under the kitchen table. Dishes in the sink from last nights supper. Garbage bags by the backdoor begging me to let them outside. Clean laundry in a heaping pile that I keep thinking the laundry fairy will come and magically put away for me.

I cleaned my house.. well... Owen and I cleaned the house. Owen flopped over one shoulder while I scrubbed, vaccumed and carryed out the trash. He let me put him down on the bed while I folded laundry but when it was time to put it away, back up he went.

The good news is... my arm didn't fall off. Even when it was numb, tingling and I wondered if it was still attatched. He's napping now and the feeling is ever so slightly coming back in my right fingertips.

It's okay Mr. Owen... I will cherish these moments, as I will miss them when they're gone.