Mettie was given Morphine last night because she was fighting the breathing tube. Her feeds are up to 3ml/hour and will keep increasing 1 ml every 12 hours.
Last Saturday we were given the Genetic testing results for Mettie. The Genetic Test showed that Mettie has a severe form of Cri-du-Chat syndrome. A significant portion of Chromosome 5 was
randomly deleted. Based on past studies, the expectation for Mettie would be very severe mental and physical disability with little/no capability to care for herself.
We had a big meeting with the Care team. This involves every doctor and specialist that takes care of Mettie. It was a very dark meeting for Matt and I. We left the meeting filled with anger because we wanted to believe that there was still a way for us to fix Mettie. The doctors painted a very gloomy picture for Mettie with many surgeries, doctor visits, breathing tubes, feeding tubes, tracheotomy, and long hospital stays. The chance of surviving all of those procedures for someone with severe Cri-du-Chat was slim. In addition, Mettie would experience severe pain and suffering. Based on her condition, the doctors do not want to perform heart surgery.
We love you all!! Know that you are not alone. Praying for His Spirit to be with you at this incredibly difficult time. Praying for miracles!!
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