On August 10th 2012 my mom had a double heart surgery. Waiting alone in that waiting room was very hard but when Professor Wellens told me that everything "supposedly" went fine I felt better. I thought it was a successful surgery as I promised to my mom. The night following the surgery my mom had a shortness of breath and had to be put on a breathing machine. The doctor said that this is something common and she should be ok within a couple of days. A week after my mom was still on the ventilator and couldn't breathe, swallow, and was constantly asleep. The doctors had no answers, and couldn't explain why. They finally decided to get an MRI done after 10 days. The result was that some particles of calcium had detached from the Aorta and deposited on the cerebellum. During that meeting they also said that they did not know what reflex she might have lost, but I could see that she couldn't breathe on her own, her consciousness was minimal, and she had lost the deglutition reflex. Based on their personal opinion it could take months or years before she could retrieve those reflexes and she may not retrieve it all. It was a few weeks now since my mom was in the ICU and I could see a little improvement; she was more conscious and trying to communicate through hand. Trying to explain that she was tired, in pain and wanted to go home, she had a tube in her mouth for 3 weeks and they finally decided to do a tracheotomy, it was more comfortable for her. I have to say that she is now alert, communicating, she remembers me and the rest of the family she can move her legs, hands and rest of her body, she has a lot of strength but unfortunately not reeducation center won't accept her, everybody is declining her, supposedly because as they say "she's a heavy patient" she spent 2 months in ICU without the proper stimulation or care to help her regain those reflexes. She is now in the pulmonary department of the hospital which has nothing to do with what she needs to improve her state. They even said it "her lungs are fine, it's neurologic" I am now looking for help! They are threatening me to send her home. When she still needs to be treated and needs a reeducation to live a somehow autonomic life. I would like to know if there is a professor or doctor that can help and recommend what needs to happen, maybe look at her medical file and recommend a technic/reeducation center. I know one thing is that her medulla oblongata has been affected and from what I've researched there is stimulation technics that exist to regain those reflexes. My mom is 65 years old and she is a fighter! We just need the right doctor to believe in her.
This nightmare has been an emotional roller coaster, battling with the hospital to keep her in the hospital, move her from ICU because she was suffering from loneliness and depression being alone 22 hours a day. They couldn't move her cause the Pulmonary department was in renovation, they also said that she couldn't progress anymore, that I had to concert with my siblings to give her something to facilitate her death, but there was no way I was going to accept that! After they said that my mom made progress, she is alert, conscious, communicates, kisses me, holds me and tells me that she loves me. How can I even consider letting her go. Please help me; I need to know if there is someone that can help us.
Thank you for responding Bill. The professor is in Europe a level higher than a doctor. He actually teaches in universities. But yeah she is not in the US but i think thattop doctors and researches do know each other internationally so I thought that maybe I could have a recommendation. When I said a "heavy patient" I meant because of the complexity. I looked in Belgium which this is where she is and everywhere I go there's a dead end. I am in the US and it is hell for me to not be there everyday!!! Thank youView Thread