Today was hard, one of the hardest days yet.  We started with so many unknowns, so many questions, too many needle sticks, so many tests.  The original plan was for him to have a sedated echo and MRI at 7 am – with no nourishment, just IV fluid, after 5 am.  These were pushed back to 2 pm, so he had a no good, rotten, very bad day.

You know what that means… we had a no good, rotten, very bad day.

We are now waiting for him to come out of sedation, and they’ll take the breathing tube out tonight (if he agrees to that plan).  IT IS SO HARD TO SEE him like this, I made sure to give his beautiful lips lots of kisses before they intubated him.  I can’t wait for him to try and eat my face off again.

We are tired, so so tired, but hanging in there.  There is a sacredness to this space, that all of the doctors and nurses seem to recognize and respect.  There is no where else in the world that we are supposed to be right now than here.

Malcolm is with a houseful of cousins, learning the life of a big family, while we are out here.  I am taking comfort in the fact that he is just a car ride away.  April, I know I have said it so many times – thank you.  Thank you for taking care of that piece of my heart.  You are providing us with a level of comfort we thought we’d be missing.

I’ll update with “The Plan” once I have my wits about me.  I am so happy with our cardiologist, he loves what he does, he loves his patients, and makes me feel like he love us.  He hugged me right back tonight, and you KNOW how I feel about hugs!!!

Loving all of you, so much.


5 thoughts on “Update

  1. Please let us know how we can help? Music, pillows, showering supplies for the hospital. Anything to give you even the smallest comfort as you face these difficult days. So happy to hear about the doctor. Glad he’s part of the love!

  2. We love you, Rebecca, and know acutely what those moments in the hospital feel like. Hurrah for big Malcolm in the big family, and a bigger hurrah to April.

  3. Rebecca and Chris. You are at the best place possible for Joey. BCH is amazing. Is Dr. DelNido the surgeon? He operated on my grand-nep-hew, Logan 2 summers ago and last summer, as well. He is amazing, too. And so is Dr. Emani. Our love and prayers are with you at this difficult time. I am a friend of Janet and Jack.

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