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My sister has a heart disorder called "Long QT Syndrome" which caused her to go into cardiac arrest that resulted in her having brain damage,.
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My name is David, I am sorry your daughter is or had such serious problems. Your post was July 2014
April 20, 2015 - 10:53am, can you tell me what has happened since? I ask because my wife died 2-23-2015, after suffering from respirory arest on 1-13-2015. A lack of oxygen to her brain for 4+ minutes caused severe brain damage leaving her unable to speak or move in any way... The doctors from two hospitals said she would never live a normal life again. They said with years of therapy she may regain some ability to move her arms but would not likely speak. I removed her from the hospital and brought her home where I spent the next 10 days with her before she passed. It was the most difficult thing I have ever done in my life. It will also most likely be the most difficult thing I will ever do as long as I live. At the time of her passing I was able to hold her close to me and comfort her to the best my ability. I love her with all my heart and soul she was my best friend, my soulmate, my lover, my confidant, she was everything to me. I don't know the rest of your situation but I just wanted to share something with someone. Thank you.
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I think you made the right choice. Our 24 year old daughter suffered cardiac arrest due to an Addisonian Crisis. She has a rare autoimmune condition called Addison's Disease. She was ( unbeknownst to us) without a pulse for 30+ minutes yet they revived her in the trauma room. Now, 69 days later she is in a subacute care facility after weeks on life support. She still can not swallow, eat, speak or walk. It's like she will remain mentally disabled as well. In her opinion from our previous talks, this is not quality of life. A life in diapers, skin sores, infections, being propped up day after day for people to smile and say " Oh but she's alive" NO, that's cruel.
March 14, 2016 - 4:48pmYou made the right choice.
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I am so sorry to hear of your loss. There are no easy answers with brain injury. It takes deep deep love to make the choices you made. My husband suffered an anoxic brain injury after a cardiac arrest.
May 6, 2015 - 4:42amThis Comment
I pray that you are blessed with comfort, Thank you for sharing.
May 2, 2015 - 10:55pmThis Comment
My friend was admitted into the hospital on June 13, 2013 for pancreatitis, on the 15, she was in a coma. During those two days, her oxygen level was dropping dramatically, and they say that she was refusing the oxygen and to be intabated??? Who in their right mind would come to the hospital to get help, and then refuse it?? They claim to have argued with her for 4 hours to intabate her, until her blood pressure bottomed out, she went into full cardiac arrest, and they intabated her anyway!!! During all of this, she severed her tongue with her teeth, and for three weeks, she remained in a coma, continuously chewing on it. They were finally able to have a plastic surgeon come in a stitch it back together, however, when she came out if surgery, they placed a mouth block to keep her from doing it again, but again, she bit down so hard she broke all her front teeth out!!! We were given the options of (1) wiring her jaw closed, or (2) pulling all of her teeth. They explained that they could replace the teeth, but never the tongue, so we went with pulling them out, all of them. Weeks went by, and they told us that she has anoxic brain damage, with no hope of recovering??? A week after that, they said she also has alpha spindal coma, in other words, the lights are on but no one is home??? I've been here at the hospital with my friend since the 28 of June. I spend every night with her, bathe her everyday and try to keep her as comfortable as I can until she is well enough to be transferred to a sub acute long term facility. Everyday, I look at her and try to figure out just how all of this happened, and the doctors have yet to give a reason??? Its all to hard to watch your friend do through this horrible ordeal, and there is no way to tell her what has happened??? Tao days ago, they took her off the ventilator, and she has been breathing on her own. She has also began to mo e her arms and legs, and is now trying to sit up, however, they tell us that it is all involuntarily, and she has no ideal what she is doing?? Yesterday, her mouth was bleeding from the continuous chewing, even with no teeth, and when I went to wipe her mouth, she stuck out her tongue, and on the tip was a piece of tooth fragment, sharp enough to stick my finger!! Help,,,, where do I go from here??????
July 28, 2013 - 8:05pmThis Comment
Don't give up! PLEASE! I was told by 10 doctors that my 55 year old husband, after a cardiac arrest at home, would either die or be a cucumber. How nice of them!!!! I am an RN, and I NEVER gave up! After 4 months of talking to him, my son and I finally got through! It started with just asking him to throw the ball again and again, and one day he did it. Every organ system of his wasn't working, and he even needed dialysis, but he fooled those impudent doctors. After 4 months, he was taken off the respirator, and could breathe on his own. I was even told by one particular doctor, that I should be planning for his death, and not bothering him with questions! Well, I told him a few choice words at the very least!
August 26, 2014 - 7:27pmEveryday, I would be there at night, and my son would be there during the day. Leaving him was not an option when I saw how bad the care he was given could be! He had a bedsore the size of a softball on his butt too! Be there for your loved one! That is the best advice I would give anyone. Ask questions, and keep asking questions. Read up on things, and educate yourself also.
Today, he is somewhat slow and has lost his long term memory, but he walks, talks, eats, loves, and can even drive a car! I have seen our health care system from a patient's view, and I'm sad to say it stinks. You are your loved one's best advocate!
God Bless You and Don't Give Up(I, too, will be looking into stem cell research for him)
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Dear anonymous,
January 18, 2015 - 4:37pmFirst I would like to thank God that you were there for your husband and that you have him with you. Reading your story has given me hope and confirmed my concern regarding the hospital and it's staff were my wife was admitted after she suffered from an asthma attack and stopped breathing. The doctors at this hospital are what I would call self proclaimed gods who could care less about my wife. I know you're post was from last year but if on the outside chance you read this I could sure use your support and would love it if you would contact me via email if you feel comfortable doing so. My email address is [email protected]. While I realize you may not even read this I'm hoping that you do and I am also hoping that you feel comfortable enough to write me. My wife has only been in the hospital since Tuesday, January 13 and every time I am there, in my opinion I see improvement in her condition. However every time I leave when I return her condition has regressed and the doctors continue to give her sedatives and other medications (Ativan) to prevent seizures. The doctors won't communicate with me one neurologist went so far as to tell me that I should not examine my wife or touch her in anyway. He made this statement after I told him that I lifted my wife's eyelid. While I am with her in the hospital I have been talking to her rubbing lotion on her feet and legs and lifting her legs bending them at the knees and while doing so I recognize improvement in her condition. While I was there the other day the ventilator indicated that she was initiating 95% of all breaths taken. When I left and returned her condition had changed to the ventilator initiating every breath. While I am certainly not a neurologist I know my wife and the other night she yawned two times in a half an hour. When I told the doctor she had yawn he had the audacity to tell me that was a sign of brain damage. Whether or not that is in fact true to me I know my wife and that is not a sign of brain damage. Please forgive me for rambling on but I am at my wits and with the doctors at this hospital. Again I would like to let you know just how happy I am for you that you have your husband back and wish you all the best I believe your persistence and your prayers are the reason you still have your husband with you. God bless you and thank you so much for posting your story on the Internet.
Sincerely,
David Hellan
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Hi Again Skenneyw-
I'm so glad your sister is improving. I have personally seen people recover quite a bit of function after something like this, but it can take a very long time and a lot of therapy. It sounds like her brain may not be fully stable yet. Sometimes it takes a long time for all the swelling and irritation to go down.
There very best thing you can do for your sister is be there, talk to her, sing familiar songs, talk about shared memories, and be very patient because if she is going to recover any function it is going to be a long road with hard work and lots of ups and downs.
I wish you all the best.
April 15, 2010 - 7:10amThis Comment
I truly appreciate you for taking the time to talk me. I am in such a bad way and I pray all day and night everyday that God allows her to recover. I love her so much and my heart aches so bad and I can't sleep because all I do is think about her and I miss talking to her, laughing, arguing, and all the other things that sisters do together. I try to do what I need to do for my own family but it's hard because I worry so much about her when I'm not in her presence. I have decided to seek professional counseling so that I can come to terms with her illness. You are heaven it feels soooo good to have a perfect but kind stanger to show concern, especially during a time like this. God bless you and I will keep you lifted in prayer for ever. Thank you so much
April 15, 2010 - 9:29pmThis Comment
Dear skenneyw,
Please let me know how your sister is doing. My 11 year old son has long QT syndrome and is recovering now. My prayers are being answered! Just keep praying and I am sure she will be fine!
I know what you are going through.
Please keep in touch...
May 4, 2011 - 8:47pmThis Comment