Sunday, August 3, 2008

Some Tough News About Simon

Dear Friends and Family

Jaime and I needed to get out an update about Simon as he is in serious need of your loving thoughts right now.

We're still in a huge amount of shock but on Friday afternoon Simon was admitted to Children's Hospital Oakland in critical condition. In less than 24 hours Simon went from being our lovely fabulous healthy little boy to having heart failure and needing critical medical attention. We're not entirely sure of how it all happened but with shortness of breath and a simple visit to the pediatrician to rule out Pneumonia, we've somehow ended up with our little boy having Cardiomyopathy meaning that his heart is not functioning well enough.

They're doing all kinds of tests to find out where the condition came from (likely not from a structural defect but possibly from a virus or metabolic anomaly). Simon is on a ventilator right now and will be for at least the next 48 hours with three possible outcomes. A) He will recover from this in a few months with no lasting symptoms. B) He will mostly recover and need to be on some medications for the rest of his life. Or, C) His heart will not recover and continue to function poorly, he will not be able to get off the hospital regiment and may or may not be in line for a heart transplant.

Our cardiologist says that we can be optimistic that Simon "looks like he's not dying" and is young enough that option A is something we can really focus on.

With him being on a ventilator and having two major lines for medications, observation, sedation and pain medication, he is right now resting relatively peacefully after about 30 hours of putting up a massive fight. He is truly incredible and if I never have to see him being that "incredible" again I'll be most pleased and grateful.

For those of you that are in the area and would like to visit, Simon will be in the hospital for the next three weeks at least and we'd love for you to be able to have him hear your voice and know that you are present. Visiting Hours are 8am to 8pm and our friend Dre will be setting up a visiting schedule as there isn't much room in the Pediatric ICU. Her # is 510-499-7590 or

Jaime and I appreciate your loving voicemails and messages thus far. We're not going to be that good about getting back to folks right now. Our world has turned upside down and we're working on holding on.

Our friend Joan tells us that her tradition says that once a person laughs for the first time that means that they are anchored to this world.
Little Shimmy is well anchored then...just in time.

We are all grateful for your loving thoughts helping to hold him tight.

From the three of us.

Jaime, Laura and Simon


Sandi said...

Laura -
I just heard about Simon's health problems. I wanted to let you know that i am thinking about the three of you and sending you much love and best wishes for Simon's speedy recovery.
Sandi Johnson

Richard said...

Laura, Jaime and Simon,
I think of you three often, wishing everyone well and know that cardiology floor where you now reside will get you home soon.
They fixed Stephanie. They will fix Simon.
I am looking forward to those lunch visits and can't wait to give everyone a big hug soon!

Judy Grahn said...

Kris and I keep an oil lamp lit for Simon every day. People I have told about his fight are praying, doing prayer drawings, and sending loving energies his way. As are all of us who know/love you and have met/love him. He is very special, and so are his parents. I will get to make a visit soon.
love Judy

Christy said...

Jaime, Laura & Baby Simon,
Sending our prayers and love to you and your family. We are here for you if you need anything.
Much love,
Christy, Rob & Kayli

Anonymous said...

Laura, Jamie and Simon,
I just got all of your news and a link to your blog from Josie. I am sending you all a mega shit-ton of love and thoughts and healing hope. I think this is the first time I've ever posted anything to a blog, if that is, in fact, what I'm doing. ;)
I love you Fitch and my heart is with you and your family and I am happy to join the boundless community of friends who hold you in the light right now.