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Loss of vital reflex after a heart bypass surgery that went wrong...
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Miab78 posted:
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 withoout the proper stimulation or care to help her regain those reflexes. Her heart is now going well. 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" . the medulla oblongata has been affected.
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 reading
Reply
 
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lifes responded:
Hello Miab,

First, I'm sorry your mom's surgery did not go as expected. Complications often result from ANY surgery. That said, let me explain some of the things you raised in your post.

The primary function of the medulla oblongata is to control breathing and respiration. Putting her on a ventilator (a vent) was the right protocol. A vent protects vital organs, the heart, and lungs. Since she is now off the vent, the ventilator did its job and kept her alive. Since she is off the vent, with a trach, it means she is breathing and her heart is working.

Let me explain a ventilator a little bit. First, all patients who are put on a vent are ALSO heavily sedated. Docs need to keep the patient 'asleep' so the patient doesn't fight the ventilator or pull the tube out. It also gives the heart, lungs, and brain time to recover while 'asleep' due to medications. Docs then slowly decrease the meds, allowing the person to 'wake up'. They used a trach as a preventative measure probably--- meaning IF she had a reoccurrence, she could rely on the trach to still get air IF her respiratory center did not respond as it should normally. The usual outcome is to get off the vent, and start physical rehab (PT) IN the same hospital.

PT includes range of motion, sitting, standing up, walking in the room and hallway. Are they doing any of these with her? If not, ask WHY aren't they? They may have good reasons to not do these in the hospital setting.

You should research rehab centers in your area. Call or visit them and discuss if they can help your mom.

I think what docs might have said is to get together with your sibs and understand that your mom is older--- I doubt any doc would suggest you "give her something to facilitate her death". You need to clarify that with the doc who said it to you.

No one here is a doctor. But you can ask to speak to the Nurse Supervisor... (get names, look at ID badge, and make sure she is the supervisor)... then, ask for a Family centered case conference meeting. Write down questions before the meeting, and at the meeting ask for
-- exact diagnoses (plural)
-- exact treatment being given
-- exact prognosis (expected ouutcomes)
-- their "plan" for your mom
-- how the family is involved in that plan
-- the exact facility (hosp, rehab center) that could help
-- which insurances pay for rehab
-- will you qualify for "home care" services
-- what outcomes do the docs see for 6 mos and 1 year from now.

I wish you and your mom a good outcome from now on.

Lifes
 
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Miab78 replied to lifes's response:
Lifes, thank you for reading my email, reply and recommendations.
I just would like to say that my mom is not off the vent, she can't breath without the machine, she is completely dependent of the machine.
See I don't know if I explained correctly but I had a meeting with the doctor and he clearly said that he went through the same road with his mom and fought his best but I some point he had to do what was best for her, which is to let her go. He told me that twice. I did everything you mentionned, write the questions/answers, ask for a diagnose,prognosis and even record the conversation to be able to listen and translate what I may not have understood..etc. But they keep contradicting themselves from the cardiologue to the pneumologist and head nurses...I am so furstrated with this situation. I don't trust any one of them.
Now I am hoping for my mom to be accepted in a reeducation center but they wont accept her due to the complexity of her state, being respiratory and neuuroligic.
I have made some researches and I am aware that they are stimulation technics that exists that can be used to get the brain to reassign itself to regain those reflex. She needs to be in a center so she can be surounded of a complete team of speach consultant, chiropractor, pneumoligist and neurologue.
The insurance is not an issue, they'll cover it, it's just a question of whether a center will accept her.
I'll move her in a center that will help her even in another country.
I think I haven't mentionned this but this is happening in Belgium. I live in the US and is constantly traveling back and forth.
I know there's studies and researches being made for cases like my mom I just need the right Doctor that can help.

Thanks again.


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