My son, 27, had an anoxic brain injury on June 30, 2017. We were told he would most likely be vegetative for the rest of his life with little chance of ever being off life support. They don't know how long he was without oxygen or little oxygen, but the damage is there. The extent is hard to determine. They did an EEG & CTScan. We chose not to pull the plug on him even though we felt like the doctors were encouraging us to do. We have our faith that God is in control and I know my son is a fighter and would want a chance to live his life, even if it is a long road to recovery. He showed me little signs in the ICU. I am thankful to say that he is breathing now on his own. He was moved out of ICU after 14 days . He started tracking with his eyes and now he smiles, and shows a lot of expression. 3 weeks out of ICU he was sitting in a wheelchair for a couple of hours a day & in PT he was following some commands like kicking with his left foot when asked. We have had a difficult past 7 weeks though because he started "sympathetic storming" or "Neuro storming". He wasn't even diagnosed for 2 weeks after it started even though he had all the visible signs and was in extreme pain. I was the one that told the doctor I believe this is what is going on after a night nurse mentioned that she thought he might be storming but didn't know a lot about it. I immediately went to the Internet and learned all I could and brought it to the doctors attention the next day. To make a long story short, it has been rough! The continuity of care has been terrible!!! They finally have attempted to manage his condition in a proper way after I wrote a email to the CMO. They were just going to discharge him. Then I wrote the letter about our experience there.
My question is to anyone out there that has experienced or has been through the storming with their loved one. I would like to know if they are still dealing with it, or did it subside, or go away? I have been told it will slow down or go away, but he can't move forward while it's happening to often. We trust God is in control, but I want to make sure I am doing my part and doing everything possible to help in his healing. The hospital is planning to discharge him now in 2 weeks and we will be bringing him home w/private nursing help. I couldn't in good concious put him in a nursing/ rehab facility since they told me honestly that they can't guarantee he would be checked on more than every 2 hrs. With the storming in play that is completely unacceptable. He can't talk or move his limbs well. He has a trach & feeding tube. He would suffer there and his condition would get worse. I know he will be happier at home with more attention and love from family, and I know he will get his medications to control or lessen the storming on time. This has been a big challenge in the hospital. Sometimes I think they are causing more harm than good at this point. Thank you in advance to anyone who can help! ❤️
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My son, 27, had an anoxic brain injury on June 30, 2017. We were told he would most likely be vegetative for the rest of his life with little chance of ever being off life support. They don't know how long he was without oxygen or little oxygen, but the damage is there. The extent is hard to determine. They did an EEG & CTScan. We chose not to pull the plug on him even though we felt like the doctors were encouraging us to do. We have our faith that God is in control and I know my son is a fighter and would want a chance to live his life, even if it is a long road to recovery. He showed me little signs in the ICU. I am thankful to say that he is breathing now on his own. He was moved out of ICU after 14 days . He started tracking with his eyes and now he smiles, and shows a lot of expression. 3 weeks out of ICU he was sitting in a wheelchair for a couple of hours a day & in PT he was following some commands like kicking with his left foot when asked. We have had a difficult past 7 weeks though because he started "sympathetic storming" or "Neuro storming". He wasn't even diagnosed for 2 weeks after it started even though he had all the visible signs and was in extreme pain. I was the one that told the doctor I believe this is what is going on after a night nurse mentioned that she thought he might be storming but didn't know a lot about it. I immediately went to the Internet and learned all I could and brought it to the doctors attention the next day. To make a long story short, it has been rough! The continuity of care has been terrible!!! They finally have attempted to manage his condition in a proper way after I wrote a email to the CMO. They were just going to discharge him. Then I wrote the letter about our experience there.
October 11, 2017 - 8:47pmMy question is to anyone out there that has experienced or has been through the storming with their loved one. I would like to know if they are still dealing with it, or did it subside, or go away? I have been told it will slow down or go away, but he can't move forward while it's happening to often. We trust God is in control, but I want to make sure I am doing my part and doing everything possible to help in his healing. The hospital is planning to discharge him now in 2 weeks and we will be bringing him home w/private nursing help. I couldn't in good concious put him in a nursing/ rehab facility since they told me honestly that they can't guarantee he would be checked on more than every 2 hrs. With the storming in play that is completely unacceptable. He can't talk or move his limbs well. He has a trach & feeding tube. He would suffer there and his condition would get worse. I know he will be happier at home with more attention and love from family, and I know he will get his medications to control or lessen the storming on time. This has been a big challenge in the hospital. Sometimes I think they are causing more harm than good at this point. Thank you in advance to anyone who can help! ❤️
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