I don't have any photos with this post because I can't find a single one of my camera memory cards.. I have a bunch. They are all probably "lost" together somewhere. This week marked SEVEN months that Owen has been on the heart transplant list!! I can't complain.. we are fortunate to still be waiting at home with a stable little boy.
I had the opportunity to meet with Owen's local transplant cardio and NP today for a consultation. Things have just not been going too smoothly and I feel that we have lost a local cardio presence over the past seven months. There is no question that his old cardio, Dr S. was phenomenal and really gave 150% to Owen. We had no choice but to transfer care to the transplant cardio when Owen was listed for transplant and I am feeling the less than stellar effects of that transfer in care. Anyway.. the meeting didn't go as well as I had hoped. I did get a few questions answered, things are just the way they are and they aren't going to change. I walked out of there feeling no better than I did before, other than now I have a good idea of who his new cardiologist is as a person and a cardiologist. He doesn't give his 100%, in fact Owen may get 30%, the rest is done "behind the scenes." It's going to take some time for me to get to the point where I can trust him and build a relationship with him.. so baby steps at this point I guess. I will say that his NP is great and she deserves a big shiny medal for all she does. She carries a heavy work load.
Thankfully, Owen has a great team at LPCH and I have great confidence in them. We go back on May 3rd and I have gone back and forth on this whole admittance and Milrinone decision. It's the cause of many sleepless nights. I keep hoping that the answer will be clear.. I suppose we have a few more weeks for that to happen. :)
I posted this on FB.. but this was Owen's funny quote of the day yesterday...
Me: Owen are you excited to start Kindergarten next year (sometime).
Owen: "I'm a little nervous cause you won't be there. But I"ll make a hundred friends, probably, I hope. I will say.. hi, my name is Owen, I was born with half a heart, but I am getting a new piece to my heart and they will glue it together and put it on ice. Now I have a whole heart."
I love his understanding of the whole process and he's such a trooper.
Wednesday, March 27, 2013
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2 comments:
{{{HUG}}} Oh how I love Owen's quote! Bless his precious heart! He always says the cutest things.
Sorry that your meeting didn't leave you feeling any better than you did before. I wish that things could just go smoothly for you during this whole process. Saying many prayers for you always as you walk the road to transplant time. Have a great Easter Holiday!
I will continue to believe like I always have since finding your blog years ago...that Owen is more wise beyond his years. You have quite a special guy there. Happy Easter to you all! I hope you get a clearer answer soon, but no more loss of sleep.
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