I am really shaken up right now, so please forgive me if I ramble.
When my son was 2 years old he had heart surgery to correct a coarctation of his aorta. The operation was success and we were told that he would be fine. Basically, they cut out the narrow bit of his aorta and sewed the two ends together.
Nobody ever told us that there was a chance that the scar tissue from the original operation could cause another blockage as he grows older. Well, now he is 10 years old and his annual cardiologist appointment yesterday did not go so well. It appears that the scar tissue is in fact causing another blockage. The Dr. told us that it should have been explained to us that this might happen. Let me assure you that I remember ever single minute of the day of his original operation and this was never mentioned to us.
The Dr. yesterday told us that the procedure that he will be undergoing this time is nowhere near as invasive or scary as his original surgery. But, I just keep seeing in my mind when his mother and I first entered the pediatric ICU ward after his first surgery. They brought us in just as he was coming out of the anesthesia. He was writhing around in pain and before they could get him strapped down or sedate him he had pulled out his catheter. I lost it. I broke down and cried like a little kid. I could not stand to see my son in that kind of pain. I knew that it was something that had to be done in order to help him, but it broke my heart. I still wake up sometimes in the middle of the night with the image of him lying there with all of the tubes and shit coming out of him.
This time they are going to do something called an angioplasty. For anyone who was like me and had never hear of this, they basically send a tube up an artery from his inner thigh to the blockage. They then inflate a balloon sort of thing that is supposed to clear the blockage. They said that it is a very routine procedure now-a-days and that we should not worry.
I am scared and pissed. I am pissed that my wonderful and caring 10 year old son has to go through this crap again. He is such a good kid who will literally do whatever he can to help somebody. After I got through breaking down last night I called him and he is scared to death. He was so young at the time of the original operation that he has no memory of it. I quickly found myself in the role of the reassuring and brave dad. I told him that there is no reason to be scared and he will take a nap and when he wakes up everything will be fine.
The Dr. said that it isn’t an emergency and suggested that we can wait until this summer to do the procedure so that my son doesn’t have to miss any time away from school. He said that my son would probably spend only one night in the hospital. All of these things make me feel better and have help to curb some of my fear, but it just isn’t fair.
Fuck those original Dr.s for not setting our expectations. They should have fucking told us that this could happen. That way we wouldn’t be blind sided by this. Fuck heart defects. Fuck the fact that sometimes loving, happy, GREAT kids get sick. Not that I think it will happen on this board, but fuck anyone who tells me I am making to big a deal out of this. This is my son who I love more than anything else in the world, and if people can’t understand my fear over this, then they can kiss my ass (That’s for you granddad).
Damn, that’s scary! I’m so sorry all of you have to go through this. And that totally bites that the original doctors didn’t explain this to you. Thankfully, it is a “routine” procedure. And you are perfectly right to be disturbed about even a “routine” procedure!
Sending good thoughts to you and your family, Greathouse.
Who can possibly blame you for being terrified and beside yourself over this? Geez! When my son was in the NICU it was the most difficult thing I’ve ever been through.
The good news is that they found this problem and can treat it! Give yourself time and talk w/other parents, you’ll get through this & be right there for him!
I had surgery when I was 5 on my thumb that was missing some tendons. It was in a Memphis summer before air conditioning so it was hot and they didn’t have special kid-sized equipment. There was a back-up in the OR and we were left out in the hall, in the heat while the pre-op sedative wore off giving me time to start to worry after spending the night before in the hospital by myself with nothing but two books (no tv!). The free flowing ginger ale was a definite plus!
I still remember quite a bit of that morning but no real trauma. (It’s been a few decades) Hospitals are a bit easier for kids now and I think pediatric personnel are more sympathetic to kid patients so I think your son should have a great deal less stress than I did and can do well if you are calm and patient as well. Kids pick up fast on our worries.
As for a through-the-leg-vein catheratization, I have had that done as well (in this century) and it wasn’t a very big deal. I didn’t have angioplasty but an ablation to ‘burn’ off excess nodes in the heart wall. There was no real pain but they do put a very heavy weight on the leg to compress the incision site since it is a fairly major artery they are poking holes in.
I would like to believe that you and your poor son will have a much better experience this time around. Medicine seems to improve yearly and I have been happy to see real advances made in the pediatric side of health care with thought going into what kids might need to recover and get well.
I still have memories of my daughter’s massive staph infection, and know exactly what you’re talking about with the tubes and machines in IC. She is in her twenties now, and robust. Your son will prosper and live a long life, if for no other reason than your obvious love and concern for him. May God comfort you, Greathouse.
Apparently my father can. He told me to suck it up and walk it off. Basically life sucks, get a fucking helmet.
I have since spoken with my mother who told me that it was my father’s way of hiding his fear. She told me that he was actually very worried, but he didn’t think it would help for me to know that he was scared. My father is usually not an asshole, but when it comes to really emotional things he tends to shut down and not show how he feels.
He didn’t mean to upset me or make things worse. My mother says that he was trying (and failing) to get me to be strong for my son because he will need me to be strong for him. Anyway, I am rambling and need to try and do some work to get my mind off of this shit. Thanks for the replies.
There’s nothing like hospitals to make one understand fear and what it really means to be afraid.
Be strong, Greathouse. Of course you’re scared - who wouldn’t be? Sorry about your dad, too. That sucks.
You’ll make it through, and Greatkid will be okay. And it’s okay to be scared in the meantime. You cry as much as you need to - we’ll be here for you. And you’ll be there for your son, and that’s all that matters.
It may be a fairly common thing not to inform people about that risk (not that that excuses it), because I had the same operation when I was four and this is the first I’ve heard of it.
And having heard from my parents how awful and frightening it was to see me in the ICU afterwards, I can sympathize with your anxiety about having to see the same thing again. Doesn’t matter if it’s supposedly a routine procedure, that’s your baby. Don’t listen to your father.
Be optimistic. Great medical advances have been made in the eight years since your son’s surgery. Everything should be fine. I’m sorry your boy has to go through this again, but he will be okay. And hopefully this will be the last one.
Let us know when the surgery is, and I’ll light a candle.
One of the little_cousin_mcl’s has a minor heart defect too. I remember how panicked everyone was when it was first discovered - my cousin was on the phone to dr_mom_mcl constantly, trying to make some sense of it alongside her son’s pediatrician.
Fortunately it turned out to be the sort of thing that is supposed to just heal, and he didn’t need surgery (apparently, it’s only serious if the baby isn’t thriving, which he is). But your story worries me about whether or not he might need more interventions in the future, and certainly it’s something they’re keeping an eye on.
All my best to you, Mrs. Greathouse, and to Greathouse Jr. during this stressful time. I’m sure everything will go smoothly, though he’ll be pissed at missing part of summer vacation!
Just to emphasize this point: I used to know a man who built and sold medical devices for these kinds of procedures. Not only are angioplasties low risk, they’ve made some remarkable technological advances in the past ten years that make them both more effective and less invasive.
It’s unfortunate he has to go through another operation, but he’ll be just fine.
Sounds like he’s gonna be just fine, though You might want to prepare yourself, though, if he’s smart he’s gonna milk it for all it’s worth (first thing I’d do is insist on having it now, that way I could get out of school for a couple of days!)
“But Daaaaaaaaaaaaddddddd, the doctor said that playing video games till 3am and eating ice cream and hot dogs helps the healing process!!!”
Heh. From my own personal experience, it seems as if medicine just don’t work that way. They’re good at fixing things, but not preventing them. I’ve been pretty fucked over from several conditions that could have been easily prevented if proper warning was given. They would need invasive surgery to be repaired, but fortunately they’re mostly cosmetic and none of them are life threatening. “Well, someone SHOULD have told you!” is an all too common thing to hear.
When I was waking up from my spinal rod fusion surgery, I noticed I wasn’t able to move any part of my body save my eyelids. The first thing that entered my 10 year old mind was that they must have somehow botched the operation horribly, and I was completely paralyzed. Scared out of my mind, all I could do is lie there while the nurses worked around me, totally unaware. After about 20 minutes, I found I was able to move my toe slightly. I then began wiggling my toe as hard as I could, which slowly gave me more and more movement to my foot. After about an hour of struggling, I was able to move my hands and write something. Later, the doctor told my parents that they had given me a muscle relaxant and forgot to tell me. Oopsie. They also said that I managed to recover from it amazingly fast. I find pride in that for some reason.
Sometimes they just don’t communicate with their patients.
After rereading my previous post, I noticed that it might have sounded a bit angry. Let me be clear that I hold those doctors in the highest regard. They saved my life. Pediatric doctors and nurses are the closest thing we have to living angels.
Be thankful that we live in an age where your son’s condition is just an overnight deal. It’s a blessing.
I’m sorry Greathouse.
I’m sorry that you’re so scared, I’m sorry your son has to go through this, and I’m sorry that your father finds it difficult to give you the support you need.
All I can offer is that I spent this morning on a paediatric cardiology ward, and that things have changed a LOT in the last 10 years. Some children are able to go home within a week of major open heart surgery. Your son should be in and out with minimal pain and discomfort, without even a scar to show off.
Its not unheard of by any means for the aorta to re-coarctate, I would have thought that someone would have told you that the primary reason for the follow-ups was to ensure that it didn’t happen, or was caught early. It’s a bad, bad thing that you weren’t told. You need to tell your son’s doctor that you were unaware of this complication and were unprepared for it. They can’t improve the information they provide if they don’t know that it’s not sufficient.
Part of the problem is that people can be overloaded with info at the time of diagnosis. Sadly, once you’ve heard the bad news, the shock means that most of the other info isn’t taken in properly, which is why they’re supposed to tell you the same things again and again, and give you leaflets to look at when you’re calmer. I’m not saying that this applies to you (if you weren’t told, you weren’t told), but it’s a common problem. It’s not the job of shocked people to listen harder, it’s the job of medical staf to tell better.
I wish you and your son all the best for the future.
Ok, now I have to throw my ex-wife into the mix. It appears that she is a bigotted moron. The Cardiologist told us the name of the Dr. who will be performing the procedure. He also gave us his contact information so that we could have any questions we may have for him answered.
Well, The Dr.'s name is very ethnic sounding. If I had to guess I would guess that it is of ME origin. She refused to speak with him and said that she didn’t want anyone working on her son if she couldn’t pronounce his last name. I told her that although we usually are very good friends and can agree on almost everything concerning our son, she was acting like and uneducated, racist hick. And that even if she was willing to let her prejudice cloud her judgement and not follow a very respected Dr.'s referal, I was not willing to do that.
In the end it was decided that we would follow the Dr.'s recommendation, but it still burned my ass quite a bit.
Greathouse, I am so sorry as well for what you and Greatkid are going through.
I think it’s good that you are standing firm in the matter of the doctor’s referral. It sounds as if your ex has some serious problems.
As for your dad, well, maybe you should try and cut him some slack. If you told him calmly how his attitude makes you feel, and he keeps on as before, them maybe it’s time to back away from him. But like your mom said, he’s scared too. Honestly, I’m not trying to make excuses for his behavior, but try giving him one more chance why don’t you?
What we ought to do here is write out something for Greatkid. Some fun suggestions like Abbie Carmichael made!
Hey, Greatkid, try this on your dad and see how he reacts! Clasp your hands over your heart, groan, and say, in a gravelly voice, “I’m comin’ to see you Elizabeth!”
[QUOTE=BakerHey, Greatkid, try this on your dad and see how he reacts! Clasp your hands over your heart, groan, and say, in a gravelly voice, “I’m comin’ to see you Elizabeth!”[/QUOTE]
Thank you. Seriously, thank you very much. I needed a laugh and that did the trick. Just the mental picture of my son doing that…oh man, that is good stuff.
Damn, I’m sorry to hear GreathouseKid needs surgery. But I’m going to agree with Baker that you should try to cut your dad a little slack. It sounds like he got all into the role of the reassuring and brave dad, just like you did. Only he forgot you aren’t a kid anymore.
Good Lord, Sanford and Son. I haven’t thought about that in years. <pause to search> Crikey, it’s still in reruns on TVland. It’s on kinda late, so maybe you could tape some for your son to practice on?
My dad and I are cool. I love my dad to death, it just hurt my feelings and upset me because that isn’t really what I needed right then. It’s all good with us though. We were able to laugh and joke on the phone today, and he even apologized. I figure my mom said something to him about it last night, over the phone.
My mother is in town for the next month visitng, so I decided that Saturday night, to help get the kid’s mind off of things, I would take everyone to see the Harlem Globetrotters. He doesn’t know about it yet. I think he’ll be really surprised and have a great time. He loves basketball, and has mentioned (for the past 3 years now) that he would like to see them.
Thanks for all of the replies and well wishes. You folks rock.
You might want to prepare yourself, though, if he’s smart he’s gonna milk it for all it’s worth (first thing I’d do is insist on having it now, that way I could get out of school for a couple of days!) 