READ THE POST BELOW THIS FIRST ---Okay. All is well. They were able to stabilize it. Which leads us to the latest. After our appeals hearing today with the insurance, we were able to talk them into treating this hospital like the fantastic hospital it is and not penalize us because we don't live in LA, Denver, or Seattle. They pretty much wanted us to pick up and move to one of these cities. Like that could ever happen. It took 2 hrs to move her with the help of 8-10 people just to get a CT scan. 9 I.V. pumps, respirator, ECMO machine. You just don't pick up and cruise to the airport and hop on a plane. Then what do you do? Just go move the family to another state? Rent a place and hang out? then know you will have to live there for 6 months to a year for post transplant treatment? Come on!!! Then we had to fight to get approval of a device that is almost approved by the FDA and is the latest and best technology and would be best for her. No approval from FDA so no approval from insurance. Had to endure the stress of the appeals hearing process. We have to fight to give her the best care like her life depends on it..... oh yeah! IT DOES!! It's bad enough to go through the emotions and stress of the situation but have to worry about this part of it too... I am not a very plesant person right now. I'm on the fight!
So as of right now. Tomorrow around mid day she will go in to get a couple pumps installed to work as her heart until transplant. This will get her off the ECMO which is the fragil part of everthing right now. The smallest little thing can upset the whole day. The centifugal pump isn't without risk but it is better than where we are at. We didn't sign up for this deal. We just wonder how we got here. One minute our baby girl is skipping down the hall holding the anethisiologist's hand smiling looking up at him and 9 days later we are here.... How did this happen?
It has been a long day. We are exhausted. We cry. We pray. It really is in God's hands at this point. May the surgeons be blessed and inspired. May Vittoria be strong. Please continue to pray for our little princess.