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Hi Josh, I'm a heart mom. My son Gabe is 9 and has had 2 pulmonary homografts put in. The first was actually an aortic valve/conduit put in the pulmonary location. That was done at 2 weeks and only lasted 17 months. He had a lot of calcification and narrowing. The doctors guess it was...

Hi, My son has a pulmonary valve and conduit and had that issue with the first one he had put in. Within a few months of surgery the narrowing was much more than what is considered normal and he had it replaced 17 months later. It had lots of scar tissue and calcium built up. The cardiologist...

My son does. He still has his own mildly leaky aortic valve and a homograft pulmonary valve. It is very loud, I can occasionally hear it when lying next to him and can feel it easily. It's been that way for a long time and is stable. Kind of freaky to hear and the first time I heard it I called...

I personally feel like if the cath valve is an option go for it. Less risk. Yes it would need to be replaced someday but 10 years is a guess. It could even go longer. My son has a homograft pulmonary valve and if a cath valve is an option for him we absolutely would try it. Cath recovery- a few...

Aw, thanks Eva. There are times I don't feel strong but I think I handle it well most of the time :) Though the behavior stuff wears on me more than the heart. It's daily and intense. Tantrums in a 9 year old are not pretty. I'm just thankful he's a small 9 year old and can't do much damage yet...

One thing to consider is a low level of brain damage from the heart lung machine. It has been shown that this happens in those who undergo OHS as babies (MRIs have shown actual changes) and children who have undergone surgery as infants are considerably more likely to have learning disabilities...

It's good you thought to have them check for that in particular. They may not have tested otherwise. I hope you feel better soon!

In my mind chronic is anything that needs regular care for that specific problem, or something that could cause complications that a healthy person wouldn't have with the same illness. But then I'm not doctor so it's purely my opinion :) I was really mad because the ped was restricting doses to...

I think the heart is usually considered chronic. I was not happy last year when I called the ped and they said Gabe's heart condition didn't put him in a chronic category. His heart works as close to normally as possible but is far from normal. I was so upset I had DH call them and inquire as to...

$50,000 maximum is such a joke! I can't believe companies could get away with that. I think there are no caps allowed now. That may be in 2014 but my husband has passed up on job opportunities because of caps. Too scary when you know surgery will happen. And even $250,000 or 1 Million can go so...

Wow that's amazing how hard it is to see! Did you use any sort of scar minimizing lotion or is that just the way it healed?

Goodness, the blue in the face was an expression. I didn't mean it literally. Obviously a bad choice of words but I simply meant that if he keeps it for years and years that is a secret that may bring about doubts in her mind, and he can reassure her over and over but she may have doubts that...

As a wife I would feel highly ticked and probably also betrayed if my husband kept a secret like this. Hopefully you will have a good long time before any intervention, but can you imagine if something happened suddenly and she didn't know? I also really think that is a big burden to carry on...

Gabe saw his cardiologist and everything looked great! I though I had been noticing some symptoms, but the mottled legs seem to just be mottled legs and everything else seems fine. His heartrate has been low and his doctor suspects the main conduction area of the heart was probably damaged at...

I'm glad you found someone! I hope the visit goes well and you can get some answers to being out of breath. That doesn't sound like something that should be happening. Be sure to take it easy until your appointment!

Tass, hmm, congenital isn't really heart disease?! Crazy. I've had the attitudes that Gabe's has been fixed so he's ok. He'll have to have it fixed again several times though. He'll never be "done". Heck, even people who likely won't need anything else done for their CHDs sometimes have things...

We belong to Mended Little Hearts and have had a good experience. It's a small, nice group. I haven't done any hospital visiting, though I was able to meet a mom who was expecting a truncus baby. Sadly the baby passed away just shy of 2 months, but we talked a lot before Gwen was born and I...

What a great idea! We're very thankful for the many people who donated the blood that Gabe has received.

This thread brought back a memory for me. When Gabe was about 4 he hated polo shirts. I asked him why and he said "because of this", pointing to the top of his scar. He refused to wear them, but the funny thing is he would go shirtless as much as he could. As soon as we'd get home he'd take off...

This thread has been very interesting to read. I may reconsider some of the time my boys spend when their brother is there (we may not have them present to wait during surgery for example), but I think to say no child should visit the ICU is also a stretch. I remember seeing children visit their...