Sep 06-2006 - The update.
Wow a lot has been going on the past two days.
We have been in a lot of meetings the past two days over Emmie-Rose's care.
Over the holiday weekend we called and left a msg to Dr. Kato's office in Miami.
Thank you Betty!
Tuesday:
He got back with us and did a conf. call with Stephanie and I and a room full of
the staff at the U. I think the staff at the U were surprised that the Yannella's were
calling around checking out their options because they were very interested in knowing
why a transplant team from Miami was contacting them.
The team in Miami went over Emmie-Roses condition and status but she did not fit
the paramaters they were looking for. She would need to be totally off the vent breathing on her own, and somewhat older. It is very hard to find doner organs for such a small baby.
At least we tried that avenue.
Wednesday:
Had three meetings this morning.
First meeting with the head of doctors to go over issues we had with the surgen that worked on Emmie-Rose. I am sad to say that I am glad I have lawyers on retainer.
Second meeting:
While we were in the first meeting, our doctor was reassessing Emmie-Rose because she seemed to be looking better and her vitals were better than the days before. Even tho the intistine is a loss she continues to look better. This has the staff totally baffeled because they would have thought she would have gone into shock and passed away by now.
Oh darn! Proved you wrong! Emmie-Rose power strikes again!
Third meeting:
Emmie-Rose is still going to pass away and here are the reasons why. After the second meeting the doctor called around asking why she may be acting the way that she is.
They put her back on some of her meds and will she what she does here in the next few days.
They not giving us false hope, but do not want to give up trying because she is not giving up!
Its now Thursday morning and Stephanie fell asleep in the room with Emmie-Rose in her arms.
I ran home to do some laundry, shave, shower, and head back up with Stephanie.
Expect Miracles!
Jenn - Ava's mom, gave Stephanie a bracelet that says that.
Ava should come off the vent sometime Thursday. She was having problems with feedings
which I think they have worked out. Emmie-Rose misses her best friend Ava now that
they are in diff rooms. The will always be sisters from diff. mothers...
Emmie-Rose is in gods hands. We are thankful for every hour and minute she is with us.
Sleep well pretty princess. We love you soooooo much...
Forever... We promise... No matter what...
Love Chris & Stephanie
We have been in a lot of meetings the past two days over Emmie-Rose's care.
Over the holiday weekend we called and left a msg to Dr. Kato's office in Miami.
Thank you Betty!
Tuesday:
He got back with us and did a conf. call with Stephanie and I and a room full of
the staff at the U. I think the staff at the U were surprised that the Yannella's were
calling around checking out their options because they were very interested in knowing
why a transplant team from Miami was contacting them.
The team in Miami went over Emmie-Roses condition and status but she did not fit
the paramaters they were looking for. She would need to be totally off the vent breathing on her own, and somewhat older. It is very hard to find doner organs for such a small baby.
At least we tried that avenue.
Wednesday:
Had three meetings this morning.
First meeting with the head of doctors to go over issues we had with the surgen that worked on Emmie-Rose. I am sad to say that I am glad I have lawyers on retainer.
Second meeting:
While we were in the first meeting, our doctor was reassessing Emmie-Rose because she seemed to be looking better and her vitals were better than the days before. Even tho the intistine is a loss she continues to look better. This has the staff totally baffeled because they would have thought she would have gone into shock and passed away by now.
Oh darn! Proved you wrong! Emmie-Rose power strikes again!
Third meeting:
Emmie-Rose is still going to pass away and here are the reasons why. After the second meeting the doctor called around asking why she may be acting the way that she is.
They put her back on some of her meds and will she what she does here in the next few days.
They not giving us false hope, but do not want to give up trying because she is not giving up!
Its now Thursday morning and Stephanie fell asleep in the room with Emmie-Rose in her arms.
I ran home to do some laundry, shave, shower, and head back up with Stephanie.
Expect Miracles!
Jenn - Ava's mom, gave Stephanie a bracelet that says that.
Ava should come off the vent sometime Thursday. She was having problems with feedings
which I think they have worked out. Emmie-Rose misses her best friend Ava now that
they are in diff rooms. The will always be sisters from diff. mothers...
Emmie-Rose is in gods hands. We are thankful for every hour and minute she is with us.
Sleep well pretty princess. We love you soooooo much...
Forever... We promise... No matter what...
Love Chris & Stephanie
posted by cyannella @ 8:16 PM
8 Comments:
At 9/07/2006 03:41:00 AM,
Anonymous said…
http://chpsti.upmc.com/view.asp?Section=Parents&ID=160&Cat=m
Try there Chris. There is more then one surgeon in the world...don't let one no stop you.
Betty
At 9/07/2006 03:53:00 AM,
Dawn said…
Betty- I'm not sure who you are but I love you!!!! ((((Hugs))))
Dawn (Chris's sister)
At 9/07/2006 04:16:00 AM,
Anonymous said…
Ok Chris, get started :) Betty
http://www.iopo.org/news_detail.asp?ID=1143
http://www.unchealthcare.org/site/NCWomensHospital/generalinfo/suggestedlinks/index_html#11
scroll down to organ transplants
http://www.lpch.org/clinicalSpecialtiesServices/COE/Transplant/IntestinalTransplant/team.html
http://www.childrenshospital.org/clinicalservices/Site2126/mainpageS2126P4.html
http://ucsfhealth.org/childrens/medical_services/organt/intestinal/conditions/intestine/signs.html
http://www.childrensmemorial.org/depts/siragusa/intestinal/intestteam.asp
http://transplant.seattlechildrens.org/about/transplant_team.asp
http://surgery.northwestern.edu/content/generic_text_only_nobr.asp?link_ik=352
http://www.georgetownuniversityhospital.org/body.cfm?xyzpdqabc=0&id=15&UserAction=PressDetails&action=detail&ref=89
http://www.stronghealth.com/services/surgical/solid_organ/transplantteam.cfm
At 9/07/2006 04:59:00 AM,
Anonymous said…
Article you should read
http://www.childrenshospital.org/clinicalservices/Site2133/mainpageS2133P19.html
At 9/07/2006 01:51:00 PM,
cyannella said…
Called Indiana University... waiting for callback...
Chris
At 9/07/2006 01:53:00 PM,
Anonymous said…
Check your work email and call me.
Betty
At 9/08/2006 02:25:00 PM,
Anonymous said…
Thinking about you guys every day, and praying constantly.
At 9/15/2006 01:17:00 PM,
Anonymous said…
God love you, how could anyone be this cruel. Your angel will be in my thoughts and prayers. Please check out Chattanooga, TN Hospital Erlanger. They were wonderful with my premie baby. ((Hugs))
Melia
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