When Laura got to the hospital this morning and they did rounds at about 8:30 am, they had some labs back. The most dramatic information was that his BNP, which measures the hormone released when the heart is in failure, was about 2800-2900. In normal hearts, it's 100. Last week, it was 1100.
We will be meeting with Dr. Clifford Chin, a transplant doctor at Stanford, this afternoon at 1:30 pm. Our cardiologist called him and they got us in today. They're not necessarily saying that we're needing a transplant, but he's definitely getting worse and it's on the table.
The thing that we're looking for over the next couple of days is for Simon's symptoms to lessen. They've upped his Milrinone and put him on IV diuretics to help ease the load. We got to see xrays from a week ago compared to this morning, and his heart is considerably more dilated, even to the untrained eye.
We're just in a 2-3 day holding pattern. Our 2 options seem to be a) back on Milrinone, stable here or b) moving more quickly towards a transfer to Stanford and getting on a transplant list. It is possible to stay on Milrinone for months and then get better.
Stay tuned...
We will be meeting with Dr. Clifford Chin, a transplant doctor at Stanford, this afternoon at 1:30 pm. Our cardiologist called him and they got us in today. They're not necessarily saying that we're needing a transplant, but he's definitely getting worse and it's on the table.
The thing that we're looking for over the next couple of days is for Simon's symptoms to lessen. They've upped his Milrinone and put him on IV diuretics to help ease the load. We got to see xrays from a week ago compared to this morning, and his heart is considerably more dilated, even to the untrained eye.
We're just in a 2-3 day holding pattern. Our 2 options seem to be a) back on Milrinone, stable here or b) moving more quickly towards a transfer to Stanford and getting on a transplant list. It is possible to stay on Milrinone for months and then get better.
Stay tuned...
7 comments:
Oh my dears. Just want you to know that I'm thinking of you all and holding you in my heart. I mean, I do every day, but today I wanted to remind you. xxooJoan
What Joan said... I think of Simon all the time, but I'm especially holding you close today. Much, Much, Much love. -Alicia
We are thinking of you....Sending our energy your way. It's a constant hug from where we work, where we live, wherever we are, every minute of the day....Love to Simon, Love to Jaime, Love to Laura, Love to the nurses, Love to the doctors, Love to the family...love, chien, krys, and kaz
Dear Mamas,
I work with Dianne at school - and I wanted to write and let you know my prayers are with you all the time.
When I got news of Simon's birth, it was a joyful, tearful occasion. My grandmother Eden was on her transition journey at that time, and his birth signaled new life - beauty, hope and possibility. I have carried his "life" and heart in my heart since that time.
I cannot even imagine what you are going through - no one can. But I know you can feel the love pouring in. I am sending mine now.
I have seen miracles happen. I believe in them. And one is occurring right now on his behalf.
May Simon be healed. Amen.
Reverend Shiloh Sophia McCloud
may simon be healed... i echo that. i am a student of vicki noble's. i have been following your blog on and off but have not in a few weeks due to the death of my grandmother. i am happy to offer simon (and his mommies and caregivers) distance reiki. blessings and love...
hey. i had the best of plans to come and spend some time with you this afternoon but then got caught in a meeting that lasted forever. we miss your smiling faces and are thinking of you each and every day. with love, eric & anne
Oh Laura and Jaime.
I am so sorry for all this bad news. My thoughts and prayers are with you.
Krista
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