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!!!!
