Huge prayer request...Dr. Tseng came to talk to me tonight about getting a huge meeting together here at the hospital involving administration, the folks from ethics, several docs, etc. You see, in medicine you treat only if you have a diagnosis. Dr. Tseng wants to appeal the ethics of that mindset since no one is doing anything to treat Noah because they can't come up with a diagnosis. He'll push for an IVIg treatment or even pursue the FDA for a compassionate action (see research being done at Boston Children's with a drug called "Omegaven" from Germany for tpn patients)...like seeing if we can get an umbilical cord stem cell transplant right here in our own back yard! There are three treatments that we could possibly use to help Noah, ONE OF WHICH I ASKED FOR 2 MONTHS AGO...IVIg, plasmapheresis, and hUCSC transplant. What doctors can't wrap their heads around is that Noah from the neck up (MRI) shows one scenario, but from the neck down shows another. In medicine they don't "double diagnose" so that is why everyone is perplexed. The angle the doc will try for is that Noah does demonstrate CIDP neuropathy from the neck down. Anyway, all this to say, please pray for God's will to continue to be done in this situation. Please pray that the big meeting will be able to take place prior to Thanksgiving and that all who are supposed to be there will be. And, finally, please pray that we would be used in this situation however we are supposed to be for God's glory alone! And, of course, the obvious, Noah's miracle! You guys all ROCK! Good night!
Saturday, November 18, 2006
Huge prayer request...Dr. Tseng came to talk to me tonight about getting a huge meeting together here at the hospital involving administration, the folks from ethics, several docs, etc. You see, in medicine you treat only if you have a diagnosis. Dr. Tseng wants to appeal the ethics of that mindset since no one is doing anything to treat Noah because they can't come up with a diagnosis. He'll push for an IVIg treatment or even pursue the FDA for a compassionate action (see research being done at Boston Children's with a drug called "Omegaven" from Germany for tpn patients)...like seeing if we can get an umbilical cord stem cell transplant right here in our own back yard! There are three treatments that we could possibly use to help Noah, ONE OF WHICH I ASKED FOR 2 MONTHS AGO...IVIg, plasmapheresis, and hUCSC transplant. What doctors can't wrap their heads around is that Noah from the neck up (MRI) shows one scenario, but from the neck down shows another. In medicine they don't "double diagnose" so that is why everyone is perplexed. The angle the doc will try for is that Noah does demonstrate CIDP neuropathy from the neck down. Anyway, all this to say, please pray for God's will to continue to be done in this situation. Please pray that the big meeting will be able to take place prior to Thanksgiving and that all who are supposed to be there will be. And, finally, please pray that we would be used in this situation however we are supposed to be for God's glory alone! And, of course, the obvious, Noah's miracle! You guys all ROCK! Good night!
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Hi Adrienne, As I was praying the other night for Noah the Lord reminded of Joshua 1 5:9. Please read this and search these verses because I feel he is guiding you through these powerful words. As always I am praying for you and your family.
ReplyDeleteWe're on our knees praying for the miracles needed. We believe the meeting with the Doctors will result in action that will change Noah's state in a very positive way. We are excited for what is to come! Keep us updated!
ReplyDeleteLove you guys!
This sounds like good news - I pray that the doctors et al. will be courageous enough to look past all the politics and just focus on saving a life. May God touch the hearts of ALL that will sit at that table and fill them with compassion, courage, trust, faith and belief that there IS A CURE for sweet baby Noah. May it be God's will. Love you guys, cb
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