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This has nothing to do with politics or hunting please read first comment, and give me some feed back based on your experiences

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  • Dcast
    replied
    OH, I'm really heartbroken to hear that. I can testify to the uneasiness you lived through with your son and not knowing when or what could happen. There is nothing else that can take what I thought was a man, and bring him to his knees before God and the world like your child suffering and knowing there is nothing you can do!

    The night I almost lost my daughter my parents were there and my niece. Ava was sitting on her cousins lap when my mom went to tickle her and she just went limp, my mom started yelling at me and it wasn't registering what she was saying, and when it finally did, I ran over to her laid her out on the floor and stuck my head on her chest to listen and didn't hear her heart, I ran to my room grabbed the stethoscope listened and there wasn't a beat by that time my mom was on the phone with 911. Just as I was starting to do chest compressions her heart started beating again and she came too. The paramedics showed up within minutes and hooked her up to the machine and they looked at me like we need to get out of here immediately one paramedic happened to be my wifes uncle he said get Abby we're taking her to the hospital now you guys can ride along. I asked him what he saw on her EKG that has him so freaked out and he told me I whipped out my wallet and gave him a copy of her EKG that her cardiologist gave me for this exact reason which he then breathed a sigh of relief. I asked if he could transport her directly to Childrens which he couldn't so we opted to take her ourselves otherwise she would be stuck in our local hospital that I wouldn't trust to stitch a finger up. We got there no issues and was sent home after 5 hours around 5:00A.M. her cardiologist calls as soon as he got in in the morning and said come see him now. We got up and was down there by 8am, he talked to the doctors at Cincinnatti Childrens and they had surgery already schedule for her. We got there around noon they sat us down talked to us had I think every doctor in the world in the room that day. They had her in the operating room within 18 hours (next morning @ 7). Her electrophysiologist that did her procedure came in and took her away. He was good about keeping us informed, he said it would be a 4-5 hour procedure. At about 11am we went down to the cafeteria to get some breakfast no sooner did we get there my cell phone rang and it was her doctor telling us we need to get up there immediately. we get up there and he informs us the catheter poked through her heart which we were warned by her cardiologist that this might happen because of her having LVNC so now we have the open heart surgery team in there telling us what is about to happen if they pull the catheter out and the hole doesn't close on it's own which makes that moment the 2nd scariest moment in my life! Needless to say they didn't have too but the procedure took 12 hours and her doc was dumbfounded by her heart. When I say she has a messed up heart I mean it! It's everything but normal, her aorta doesn't follow the path everyone elses does, not to mention her heart is basically backwards. All this and she lives a normal life! She is scheduled to go back in August to have a 3rd procedure done because they believe more pathways came back!

    Our children are the greatest possession we have and it is hard beyond any words to think they could be gone in an instance. Most people just have fear of that, while people with children who have other serious problems think of it daily and know it can happen at any moment. As for me I'm not worried so much about myself as I am for my wife, kids, and the unknown.

    Leave a comment:


  • Ontario Honker Hunter
    replied
    My boy had WPW and the damned coroners tried to pin that as a cause of death. Morons! His mother was epileptic the last twenty years of her life, his grandmother was ravaged by epilepsy the last forty years of her life, and one of my wife's uncles died from seizures at a young age. And Wesley had three seizures in the month leading up to his death, one of which would have killed him if I hadn't happened to hear him. The thing is the doctors refused to treat his epilepsy, wanting to wait for another seizure. Why? So he could die again? Which is exactly what happened. But if the coroner can blame his death on WPW (for which there was absolutely no evidence) then the doctors have an excuse for not treating him for that - because almost all people who have the condition live their entire lives asymptomatic - not knowing they even have it. 0.3% of people have WPW and 0.06% of those who have it are in danger of dying. And, of course, it's virtually unheard of for anyone who has the condition to die from it without ever having a stressed incident (tachycardia) prior to death. But that doesn't seem to matter. On the other hand, seven to seventeen percent of people who are epileptic (which Wesley was) and TREATED for it (which Wesley wasn't) will nonetheless die from sudden unexpected death. Wesley had almost no chance of not having died from a seizure (and the scene of death clearly supported that conclusion!) Yet the Chief Coroner of Ontario tells me he made his choice for WPW as a cause of death based on probabilities! Whose medical literature has he been reading? Where does he get his probability statistics? I asked him. His answer was to not answer! And no one seems to be able to do anything about it ... or even want to do anything about it. Totally beyond accountability. Too bad it wasn't Jim Carrey's kid who died. Or Paul Schaefer's kid. Or the prime minister's kid. Then something would get fixed. I guess we just have to wait till it is one of those kids who succumbs.

    Leave a comment:


  • pudgexl29
    replied
    I cant say Ive ever experienced something similar, but you are definately in my prayers. Best of wishes.

    Leave a comment:


  • Dcast
    replied
    Thanks for all the prayers!

    Mike, I think that pretty much sums up the feelings!


    I know I'm letting this get to me more than I should, but when the nurse tells you this and then says it isn't serious right now, but we need to see you ASAP then tells you they can't get you in until the end of June it really is unsettling. Clearly they caught it early and know it doesn't pose a big risk as of yet at least I hope anyway. The one thing from what I read and maybe the reason they're holding off until then is to see the progression of it. They caught it in my echocardiogram while checking for "Non-Compaction of the Left Ventricle Myocardium" which is what my daughter has and she also has Wolfe-Parkinson-White Syndrome. WPW is an electrical problem which is caused by an extra pathways running between the two nodes that make your heart beat. Hers would go into tachycardia with the heart beating in the 320+bpm range. When she was 2 yrs old (2006) she had an episode in which she went into ventricular fibrillation and fortunately came out of it otherwise I wouldn't be talking about it now. She wen into corrective surgery the next day and after 12 hours they were able to ablate 3 of 4 pathways, with the 4th not posing any danger Then last summer (2012) her doctor discovered some of the pathways returned and did corrective surgery again still having to leave that one pathway because of the location, it posed a greater risk to destroy it than to leave it so we opted to leave it. As for the LVNC it is a condition effecting the muscle(myocardium) of the left ventricle. Hers didn't fully form in-utero which poses possible heart failure, but one of her doctors is the lead researcher in this condition for pediatrics. She had a genetic test done and everything came back good, which means it shouldn't be hereditary, but he said we should definitely be checked for it along with immediate family, which leads me to last Friday finding out that I have a Dilated Aortic Root from what I read is an aneurysm where the aorta comes out of your heart. The thing that bothers me is it progress's but you never know how fast. The great thing is it is fixable by replacement from what I read. The bad thing is they have to fix it before it decides it wants to burst and there is no set standard for that time. The whole thing is frustratingly slow, but I personally feel I will be in no better hands than the doctors I will be seeing. I know them well and I know the miracles they work everyday on thousands of children that see them. They aren't to proud to go outside of their hospital for answers and the researchers do work with many other researchers throughout the USA and World.

    I have already started changing my diet and lifestyle based off of what I read, which would be good for me regardless but this gave me a swift kick in the gluteus maximus. I am going to call today to talk to the doctor or a nurse to get a little more info to hopefully ease my mind. I guess I will just KCCO until I get more info from the docs.

    Leave a comment:


  • Ga hunter
    replied
    Dcast, I will be praying for you and your family! Just know that you have a God that's bigger than all of your problems!

    Leave a comment:


  • Pray- hunt-work
    replied
    Mr. DCast, I don't know you from Adam, you live over a thousand miles away, and our paths will most likely never cross, but I have nothing but love and compassion for you. Yourself and your family will remain in my prayers, until I get the good word that you and your family's health has been regained. I will say that there is only one Man that can truly give us peace of mind, and my best advice is to look to him.

    Leave a comment:


  • mike0714
    replied
    don't fear death just not living. Fear not telling people you love that you love them, fear not spending time with your friends, fear a million different thing but not death. Here is the good news life is what you use to cross those fears off the list. Live like every day may be your last and surround yourself with loved ones, friends, and fond memories. Kiss your wife, hug your kids and spend time with your friends. This is all anyone can do.

    I often pray if I dye let it be with a smile on my face and love in my heart. Thats how I hope to go home.

    Leave a comment:


  • mike0714
    replied
    this is my thought on the subject. sorry it is so long and a little abstract but it was a letter i wrote to a friend who asked about death and thought it would fit this situation.


    When asked if I fear dying I say “no” without hesitation. All due to one small saying that has changed my life. Death has become not an end but the greatest beginning of all time. A dying man once told me “I do not fear death just not living”. Nothing more said on the topic. Just of the day outside of a deathbed. As he breathed for the last time less the 48 hour later those words rung in my ears. “I do not fear death just not living” such a simple sentence that holds meaning beyond the comprehension of the living or maybe just the surviving.

    At birth there is innocence aplenty and life is budding. Death is so far it seems as though it may never come. But time is cruel. As years pass age stops becoming but a number. Days turn to night; friends come and go, love waxes and wanes just as the moon, and loved one’s pass from this world. As the days pass by, each one a little darker then the last.

    We must find what we must hold on to, what lights the darkness. The little flame of a candle can light a whole room. Just like the flame of love lights one’s very soul. It burns bright with love, friendship, and life. This flame has only one extinguisher. One that none of us know. All the while the surviving candle burns low despite and abundance of wax.

    “I do not fear death just not living” what does that mean to you? Posed to the mother of a dear friend taken far to early. It promotes talk of a life unfinished; hopes, dreams, memories, plans, and the future. When a tragic disaster blows out the candle, we talk of the wax left and the flame that should have burnt for many of years. We talk about how bright it was and the light that it gave off. The extinguishing of that light changes all whom it once touched. It makes candles burn brighter and brighter. The surviving candle burns brighter than ever thought possible.

    As time passes one finds their way in life. Finds god, friends, love and a family. We find people to cry, hurt, smile, laugh and live life with. The flame moves, changes, grows, and burns white hot with a soul.

    “I do not fear death just not living” what does this mean to you? Posed to a man of god whose candle is steadily dwindling. A man who loves others no matter their past, where they came from, who they know, rich or poor. Someone who even while dying can live for others. The question promotes talk of faith, loved ones, laying down your life, and loving without prejudice. We speak of not being able to protect loved ones once you’re gone, and not being apart of lives. A few short months later as his candle finally burns out.

    “I do not fear death just not living” I fear not being around for the ones I love, not watching friend and family grow old, not watching boys and girls become men and women, not loving without prejudice, not watching dreams come true, not protecting loved ones. I have come to fear many things but death is not one of them.


    In moving memory of
    MAS. Father and friend, AJM Brother in life, mischief, and death TG Friend and man of God

    Leave a comment:


  • jay
    replied
    Well, at least you found out about it now when its not a problem instead of when it is a problem. I'd try to look at it as a positive that it was caught early. Sorry to hear about your daughter's condition.

    Leave a comment:


  • FirstBubba
    replied
    BTW! Dcast! Just one more prayer list you're on!

    Leave a comment:


  • Gary Devine
    replied
    Hang in there, Dcast.

    I will pray for you and your family tonight, before I go to bed.

    Leave a comment:


  • FirstBubba
    replied
    Dcast

    We ALL have that "ticking" time bomb! NO ONE knows when the alarm will go off.
    Apparently, up to this point, you've been unaware of this "condition".
    First, your age is on your side.
    Next, apparently (by your distant appt.) the condition is treatable.
    I'd say you're in pretty good shape.
    Regardless of the physician's skill and abilities, get at least one more opinion!

    No. 1 - Do what your doctor tells you!
    No. 2 -Understand your limitations. Operate within those limits. Work to expand those limitations!

    Leave a comment:


  • buckeye
    replied
    I know what you are going through. My four month old son has multiple issues with his heart. He has a VSD and transposition of the great vessels. My wife and I both checked out O.K. though. Thankfully I live about 30 mins from the Cleveland Clinic and Rainbow Babies. A doctor that we know from the clinic actually told us Rainbow is the best place to be. I was not aware of your daughter condition. I will keep you both in my prayers.

    Leave a comment:


  • dfleer7
    replied
    I have never heard of this but I wish the best of luck to both of you and a speedy recovery.

    Leave a comment:


  • Ontario Honker Hunter
    replied
    I could talk about my sad tragic experiences with my son's conditions and doctors waiting but that just isn't fair. You have something entirely different and there's nothing productive about making comparisons of situations that are not comparable. Seems like you have enough sense to know that.

    However, I do recommend that you obtain a second opinion. I have no doubt that this fellow at Cleveland is the best or one of the best but you seem to need some peace of mind. Contact them and ask them to help you get a second opinion and the reasons why. Most good physicians are not so proud that they wouldn't understand the unhealthy consequences of not having peace of mind. THAT I can attest to. When my eyes first started falling apart the anxiety of not knowing how long I would be able to see nearly destroyed our family. Whatever it costs, get some peace of mind. Good luck. A lot of us are in your corner and anytime you need to talk about this, don't hesitate to come here. Matter of fact, now that you have put me in the loop I'm liable to get downright snoopy. Please keep us informed about your daughter's progress too.

    Leave a comment:

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