wapiti Posted July 21, 2011 Share Posted July 21, 2011 I'm reading about it now, and wondering what the recovery is like, such as whether there is pain at the locations where the catheters are inserted (I think one will be in the groin and the other one up top someplace). It is very likely that ds8 has hypertrophic cardiomyopathy. I'm still hoping it won't be a big deal, but this procedure IS kind of a big deal. Icky. I feel nauseous, after my long chat with the cardiologist today. I haven't told ds yet. He might freak out and decide that his heart hurts :tongue_smilie: Quote Link to comment Share on other sites More sharing options...
CalicoKat Posted July 21, 2011 Share Posted July 21, 2011 I'm reading about it now, and wondering what the recovery is like, such as whether there is pain at the locations where the catheters are inserted (I think one will be in the groin and the other one up top someplace). It is very likely that ds8 has hypertrophic cardiomyopathy. I'm still hoping it won't be a big deal, but this procedure IS kind of a big deal. Icky. I feel nauseous, after my long chat with the cardiologist today. I haven't told ds yet. He might freak out and decide that his heart hurts :tongue_smilie: I had one. I wonder if they'll sedate him. He'll have to be very still. It was not painful. But I was uncomfortable and I had to pee in the worst way because of all the dyes they used. And then to lay there with a sand bag on my leg for the ? hours required afterwards. Find something to distract him during this time because that's truly the dangerous part if he should start to bleed. :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
wapiti Posted July 21, 2011 Author Share Posted July 21, 2011 (edited) Thanks, CalicoKat - he'll be under general anesthesia during the procedure. Are you saying he'll have to be very immobile for hours afterward, during the time they wait to see that the insertion point is healing? That might be hard for a wiggly 8 y.o. - he's the type of kid who if you tell him he can't move, he'll have an irresistible urge to do so. ETA: nevermind, I see it... All kids need to stay still for several hours after the test to ensure that bleeding to the groin or the area where the tube was inserted has stopped. Great... What concerns me is that he has a history of low platelets (though they were normal - hurray - last January). Obviously that would be a bleeding risk, but conversely he also is heterozygous for Factor V Leiden, a clotting risk. Hmm. I will be having a separate appointment with the specialist who runs the test - maybe I need to call the hematologist.... or maybe I'll have her call her.... ugh. Edited July 21, 2011 by wapiti Quote Link to comment Share on other sites More sharing options...
Elfinlady Posted July 21, 2011 Share Posted July 21, 2011 My son didn't have a study, but he did have heart surgery via catheter. The only pain he had afterward was from the bladder cath. He didn't want to go to the bathroom because it hurt. I don't think he had to stay still for a long time. His owies were tiny. The surgery was scheduled for 6 am, and he was home by 4 that afternoon, which included a stop for food. Quote Link to comment Share on other sites More sharing options...
wapiti Posted July 21, 2011 Author Share Posted July 21, 2011 My son didn't have a study, but he did have heart surgery via catheter. The only pain he had afterward was from the bladder cath. He didn't want to go to the bathroom because it hurt. Thank you very much for pointing this out. Ds has some voiding dysfunction issues, so this'll be even more fun, but it definitely helps to be aware of this angle ahead of time. Quote Link to comment Share on other sites More sharing options...
CalicoKat Posted July 21, 2011 Share Posted July 21, 2011 Thanks, CalicoKat - he'll be under general anesthesia during the procedure. Are you saying he'll have to be very immobile for hours afterward, during the time they wait to see that the insertion point is healing? That might be hard for a wiggly 8 y.o. - he's the type of kid who if you tell him he can't move, he'll have an irresistible urge to do so. ETA: nevermind, I see it... Great... What concerns me is that he has a history of low platelets (though they were normal - hurray - last January). Obviously that would be a bleeding risk, but conversely he also is heterozygous for Factor V Leiden, a clotting risk. Hmm. I will be having a separate appointment with the specialist who runs the test - maybe I need to call the hematologist.... or maybe I'll have her call her.... ugh. Time for a game boy rental or purchase. That will keep an 8 yo still for hours! Yes I'd call your hematologist and let them know what's scheduled. I've found that we've always got to bring in our other specialists to make sure that utmost care is being taken for all medical needs. Bleeding out will be the biggest concern. I remember having a sandbag weight on my leg too. No getting up for potty at all! Managing a bed pan on my own was difficult but so necessary because of all the fluids used for the test. Fortunately he's a boy. That makes some things easier. Quote Link to comment Share on other sites More sharing options...
SailorMom Posted July 21, 2011 Share Posted July 21, 2011 My DS has had two - both radiofrequency ablations. He said the only part that was bad was having to lie still for 6 hours after the surgery :) He didn't really even notice the incisions - they are minute. Quote Link to comment Share on other sites More sharing options...
melissad2 Posted July 22, 2011 Share Posted July 22, 2011 I'm not much help on the recovery part but my son had one as a newborn because he was born with pulmonary valve stenosis. He was cathed and his valve repaired when he was four days old. He was under general anesthesia and he spent the night under heavy sedation because its impossible to keep a newbie still :D. There is a new type of way that they seal the incisions that don't require them to stay still as long but I'm not sure if it's used in children or not...it is called vasoseal. Quote Link to comment Share on other sites More sharing options...
wapiti Posted July 22, 2011 Author Share Posted July 22, 2011 My DS has had two - both radiofrequency ablations.He said the only part that was bad was having to lie still for 6 hours after the surgery :) He didn't really even notice the incisions - they are minute. Thank you! This helps. I'm still trying to figure out what's going to be involved in the procedure - I don't think ablation is on the table yet for his thickened septum, but he mentioned being able to "fix" the messed up "electrical circuit" that's producing the abnormal EKG, if they can find it during the procedure. There is a new type of way that they seal the incisions that don't require them to stay still as long but I'm not sure if it's used in children or not...it is called vasoseal. I'll ask about the vasoseal - I like to know it all ;). I would expect that they'd be using cutting edge technology, as one of the top children's hospitals, but who knows. Thanks for the tip! ok... hours have passed and I'm starting to feel less nauseous. It's still not scheduled yet - I expect a call in the morning.... I have more googling to do about it but I'm too tired. I'd rather read the boards, like a supermarket magazine.... Quote Link to comment Share on other sites More sharing options...
wapiti Posted July 22, 2011 Author Share Posted July 22, 2011 (edited) My DS has had two - both radiofrequency ablations. Ok, I've been reading some more, and it may be that this indeed was what the cardiologist was talking about today (he tends to speak a bit euphamistically :glare:; I prefer official terms). I found this on the hospital's website: Cardiac catheterization: Catheter ablation is one treatment specialists at the Heart Institute use to correct an arrhythmia. In this minimally invasive, transcatheter procedure, doctors insert a catheter through the leg veins and into heart chambers to burn (radiofrequency) or freeze (cryoenergy) and eliminate the sources of heart irregularities. More than 90% of the time, this permanently cures the arrhythmia and no further treatment or activity limitations are necessary I'm a little freaked out that they want to do this now. Originally, we went to cardiology when the ped discovered a new murmur at a well checkup a month or so ago. That was from a VSD that's tiny. But then the echo uncovered the slightly thickened septum, and the EKG was abnormal. The holter was also abnormal, just like the EKG. Bloodwork was normal, though they're going to do some genetic testing while we're there for the catheterization. Originally, the thickened septum didn't seem to be a big deal. I'm a fish out of water here - I know nothing about heart stuff. I'm having trouble determining what the appropriate level of freak-out is. Sailormom, if you don't mind my asking, what was your ds's condition? I'm just curious. Once it was fixed, was there anything different about your ds, outwardly? My ds has all sorts of odd issues and part of me hopes they could be "fixed" along with his heart, LOL; probably not. Edited July 22, 2011 by wapiti Quote Link to comment Share on other sites More sharing options...
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