Thursday, December 11, 2008

Off to San Francisco

During our visit at Cincinnati, the doctors recommended that we talk with UCSF about the Tracheal Occlusion surgery. We were contacted by the nurse at UCSF yesterday about the procedure and were asked to come out for a consultation. Jason and I decided to go for the consultation and determine if we wanted to proceed with the procedure. The only catch is that we have the consultation on December 16th and will have to make a decision immediately. The last day that they can do the procedure is December 18th since I will be 28 weeks on Friday, December 19th.

It is really hard to plan for this since we are not sure what we want to do about the procedure and will be traveling across the country. If we decide not to have the procedure, we will come back on December 17th; if we decide to have the procedure, I will not be coming back to Atlanta until late January.

5 comments:

Liz and Shane said...

Have a safe trip. We are praying for you.

Alex, Ingrid, Alina & Robbie Houchin said...

Hi Marion,

We know what you are going through. It's such a tough decision whether to go for the procedure or not. One thing we found helpful was speaking to some parents who had undergone Feto. We asked the hospital to get us in touch with them and asked all the questions we could think of. Also, we read up every bit of research we could get our hands on.
By the way, my husband started a discussion group on Cherbus under More Medical Info & Suppport - In Utero Procedures where 3 different families have written about their experiences with Feto.
Good luck and if you have any questions, don't hesitate to email us: ingrido17@yahoo.com

All the best,

Ingrid & Alex

CDHi Admin said...

Dr. Harrison and his team are amazing, you are in wonderful hands. If we can do anything for you, please let us know!

Dawn
mommy to Shane (1/28/93-9/11/99) CDH, multiple birth defects and complications

CHERUBS - Congenial Diaphragmatic Hernia Research Awareness and Support - http://www.cdhsupport.org
CDH Forums - http://www.cdhsupport.org/members
CDH Research - http://www.cdhresearch.org

Brian and Cassi Reed said...

My husband talked to you on the phone, and just wanted to know that we are both thinking of you constantly. We hope that you made the best decision for you litte virginia whatever that may be. I remember how difficult that decision is. Either way, know that we are always her email or a phone call away. Please let us know if you ever need anything at all, even if it is just to vent.

prayers for you all
love brian, cassi and angel elli

Kathya said...

What you are going through is really hard i went to see a doctor also for the feto operation but i decided not to do it. I wanted to write to you to let you know that in Gainsville, FL in Shads Hospital of the University of Florida there is a really good cdh doctor his name is doctor david kays he is a great doctor and has a 92% survival rate for cdh babies.