So, first of all I apologize for venting on here, but I really feel I need to get this off my chest.
Emotions are high right now, as I just got back from a funeral, my friend/co-worker's infant daughter who was 19 months old suffering from a heart defect that lead into lung failure, down syndrome and many many other things. She fought since the day she was born and had gotten so much better that she was released. 14 days afterwards she took a turn for the worse and wasn't able to recover.
That is the short version. What hits home for me is that my third son is 18 months old, with a similar heart defect and is doing very well. We are ever so greatful on how well he is doing. But at the funeral, there was guilt. That our son was doing so well and their daughter did not. Why?
She went thru 9 surgeries, our son 7. We were neighbors many times at the Children's Hospital. Our son spent 8 months total at the hospital, she spent 17 months total.
So, today was very hard for us, to be both greatful that it wasn't us, guilty for thinking that, sorry that she didn't make it, and regret that we couldn't do more for them.
Thanks for listening. I just needed to get all that out. I umm, I lost words right now.
Damn man, that must be difficult for you and my thoughts go out to you, your family and friends and anyone else involved.
Hey SirWulf, I think it's good that you're venting. I'm sorry to hear about your friends and their loss. One of my family members has a genetic issue that we've had to contend with since day one, so I understand what it's like.
Thank you two. We are blessed that our son is doing so well. However it isn't over. At 3-4 years old he'll go in for another surgery. Than around 20 years his heart may give out entirely and need a transplant. So, there is still a lot of risk. But, he has the chance to do great things.
My friends daughter didn't really get that chance. Though some of the surgeries she had were experimental, with tubes that were created by the surgeon. So... maybe they can learn something from her at least. Also of note, she was a twin. Her sister is doing alright, though she has downs syndrome also.
Hang in there, man.
I'm glad to hear that your child is doing good. There's nothing that worse than sick children. It's always a great loss for a lot of people when a child dies. I think that you're being unfair on yourself when you're feeling guilt. You got your son, and that's important. We can only hope that these kinds of cases are easier to treat in the near future so less people have to suffer over the loss of their child.
Thanks. I realize it is unfounded, but just can't help think it. Same with my wife. For awhile we shared time together, as a big hospital family of sorts.
I just hope that with the experimentations they did on her, the tests and the home-made valves and such... that the field learned some valuable things that can be applied to save others down the road.
So I've now had a few days. I'm doing better, I took a little break from the game as I noticed that I was getting irritable with things.
But, I think I'll get back in tonight now as I'm doing better. Thanks all. I hope to never have to host my son's funeral, but it is always a possibility. They say at about 20 years old his heart may need a transplant. Hopefully by then technology will be much better and safer. We shall see.
Anyhow, ready to move on and live day to day. Get back to my usual 'old man' self.
See you online!
I'm glad to hear that you're doing better.
I'd just like to mention that all people should become organ donors.
I signed myself up the same day I was old enough to do it myself.
I do not understand why people aren't organ donors by default.
You're not gonna need your organs if you die guys. Help people out. Sign up today!
I know I am, did that when I got my license. I agree, if my death can save the lives of others... why not?
(Feb 18, 2016, 02:18 AM)Enzyme Wrote: [ -> ]I'd just like to mention that all people should become organ donors.
I signed myself up the same day I was old enough to do it myself.
I do not understand why people aren't organ donors by default.
You're not gonna need your organs if you die guys. Help people out. Sign up today!
^This
So, our son's last test just confirmed that he is going to need his next heart surgery sooner than later. Instead of the 3-4 year plan, it'll be at 2 and a half.
Basically, he is growing faster than they were expecting. Ironically it is good that he is growing, it shows that he has been doing awesome, but it is bad in which the installed tube is starting to stretch, causing stress on the heart and causing him to have issues.
What this means is that we are now playing the waiting game. It could be tomorrow, it could be mid to late January, but the fact is that he is going to have another open-heart surgery very soon. My wife and I are very stressed. Every time he is on that table he is at risk. They have to shut his heart down completely. And, as it is exposed there is a risk of infections on top of that.
If things go well, he'll walk away from this before February with 9 surgeries under his belt. He is a tough little 2 year old.
I found this out at lunchtime at work. I didn't get much done that afternoon...
Hang in tight SirWulf. Good luck to your and your family and hopefully have at least a enjoyable Christmas and take it one step at a time.
I hope the best for you and your family, Wulf. Stay strong.