We spoke to his primary cardiologist last night and have a reprieve on intervention. Basically, he said that in young children who are too small for the smallest adult size valve replacement the decision on when to intervene is a matter of balancing risk.
The risk of any procedure on a child who has had multiple surgeries and caths vs the risk of an "adverse event" due to the untreated stenosis. Adverse event = passing out or having an arythmia / heart attack.
Apparently, the risk of 'bad things happening' doesn't increase suddenly once you reach the threshold for critical stenosis. Instead, its a steady increase.
However, there is no cure for the AS that is either permanent or risk-free at this age.
So, we get to make a judgment call balancing the risk of leaving the AS to progress vs trying a cath on an aortic valve that is already bicuspid, has had prior caths, has scar tissue from OHS repair and sub-aortic resection. OR going to OHS for a valve replacement that in itself creates a more difficult replacement event in future.
We have decided to wait 6 months (and make an overseas trip) with our friend the critical aortic stenosis.
I asked if it was crazy and the cardiologist says he thinks that will be fine.
We checked heart wall and heart size and its only minimally enlarged so apparently that is reassuring as they would not expect sudden changes in 6 months at this age.
Showing posts with label aortic stenosis. Show all posts
Showing posts with label aortic stenosis. Show all posts
Thursday, March 22, 2012
Tuesday, March 3, 2009
Cardiology Clinic Visit - 3 months post OHS
Wren had an echo and EKG today. The quick summary is that he looks good, 3 out of 4 of his heart obstructions / defects are stable / OK but the fourth, his aortic valve stenosis, has progressed slightly but measurably. We are going to watch that carefully next clinic visit in 4 months time. We are free to visit Australia in the interim!
Here is Wren having his echo while watching Big Bird in Japan and cuddling snuggle bunny. Laura was our echo tech.
Here is Wren having his EKG. He was very good today and after his initial anxiety about the clinic he did very well. He was very pleased and self-congratulatory when he was "all done" and free to go "supermarket."
Now the detailed version:
Wren is gaining weight fine. He now weighs 13.4 kg or 29.5 lbs. He has gained 800g since the last clinic visit 3 months ago. His physical activity and development does not show signs of any delays or problems. However, Dr Lewin mentioned that in future we should bring up any developmental concerns with our pediatrician even if they are slight. For the first time he even mentioned school, saying that some families have a complete neurological assessment prior to entering school and that it might be a good idea. Even reading delays or other apparently normal issues can be related to surgery etc. For now, we have no concerns in this area. Wren has just entered the "why" phase and is asking us "why do crows eat?" and "why does the [telephone] wire go into house?"
The Three Areas that are Fine
Wren subaortic obstruction which was resected during his last surgery is fine. There is no sign of recurrent narrowing although that is a known concern with the procedure.
His supravalvar area is open and clear as is the hypoplastic aortic arch which was repaired in his first surgery at 6 days old.
His mitral valve which was classed as having mild-moderate regurgitation last time is actually slightly better with only mild regurgitation. Yes!
His Left Ventricle is still mildly thickened but not beyond what is expected with his aortic obstruction remaining.
Aortic Valve
Wren's aortic valve annulus remains too small and has shown some progression in gradient in the past 3 months. The max velocity last echo in December was 3.9 m.s and has increased to 4.2m.s. The mean gradient has increased from 37 to 42. It is still classed as moderate stenosis but the threshold for intervention is generally 50 which is not too far off it the stenosis continues to progress like this.
Dr Lewin said he has seen cases like this where the stenosis becomes stable and that it is not clear whether it has been happening gradually or happened in the period closer to the surgery. If it is progressing the next step would be to talk about a ballooning of the valve in the cath lab.
We are going to try and be optimistic and hope for a stable aortic valve in our appointment in 4 months.
Overall, things went better than I had feared and almost as good as I had hoped (except for the AV). Plus, we can gather our emotional equanimity in Australia!!!!
Here is Wren having his echo while watching Big Bird in Japan and cuddling snuggle bunny. Laura was our echo tech.
Here is Wren having his EKG. He was very good today and after his initial anxiety about the clinic he did very well. He was very pleased and self-congratulatory when he was "all done" and free to go "supermarket."
Now the detailed version:
Wren is gaining weight fine. He now weighs 13.4 kg or 29.5 lbs. He has gained 800g since the last clinic visit 3 months ago. His physical activity and development does not show signs of any delays or problems. However, Dr Lewin mentioned that in future we should bring up any developmental concerns with our pediatrician even if they are slight. For the first time he even mentioned school, saying that some families have a complete neurological assessment prior to entering school and that it might be a good idea. Even reading delays or other apparently normal issues can be related to surgery etc. For now, we have no concerns in this area. Wren has just entered the "why" phase and is asking us "why do crows eat?" and "why does the [telephone] wire go into house?"
The Three Areas that are Fine
Wren subaortic obstruction which was resected during his last surgery is fine. There is no sign of recurrent narrowing although that is a known concern with the procedure.
His supravalvar area is open and clear as is the hypoplastic aortic arch which was repaired in his first surgery at 6 days old.
His mitral valve which was classed as having mild-moderate regurgitation last time is actually slightly better with only mild regurgitation. Yes!
His Left Ventricle is still mildly thickened but not beyond what is expected with his aortic obstruction remaining.
Aortic Valve
Wren's aortic valve annulus remains too small and has shown some progression in gradient in the past 3 months. The max velocity last echo in December was 3.9 m.s and has increased to 4.2m.s. The mean gradient has increased from 37 to 42. It is still classed as moderate stenosis but the threshold for intervention is generally 50 which is not too far off it the stenosis continues to progress like this.
Dr Lewin said he has seen cases like this where the stenosis becomes stable and that it is not clear whether it has been happening gradually or happened in the period closer to the surgery. If it is progressing the next step would be to talk about a ballooning of the valve in the cath lab.
We are going to try and be optimistic and hope for a stable aortic valve in our appointment in 4 months.
Overall, things went better than I had feared and almost as good as I had hoped (except for the AV). Plus, we can gather our emotional equanimity in Australia!!!!
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