[ Post a Response | ECHO Dialogue ]
Posted by pippa duffy
on October 27, 2009, 18:36:26, in reply to "Re: Leo heading for Rastelli (maybe)"
86.159.137.207
Hi Julie
Thanks for your reply - I always prefer honesty... I can deal with anything (eventually) as long as I feel I am being given the full picture. Circumstances have transpired to mean that we will not have the opportunity to discuss this procedure at all, or at best, late on the night before it happens. Can I ask for a bit more info:
I'm assuming that your son's PA was arising from the left ventricle? so did they have to use the conduit which contains the homograft valve to make the connection, and 'lose' his existing pulmonary valve?
Did they explain that Little O might need more operations? Is this to replace the conduit(s?) And did they indicate how long they expect the current repair to last?
What kind of an improvement did you get in terms of Sats?
It sounds like your son is very active. How is his stamina compared to his peers, do you think? I know each of our children is different, but I'm curious to know what level of 'near normal' they aim for with Rastelli.
You say he had his BT shunt at 16 days, until he was just after 3. It sounds like it lasted a long time? What degree of Pulonary Stenosis did he have? I'm just interested in the comparison, because Leo had his BT on Day 2, and we were told they would be operating when he was around 6 months plus. I know that they outgrow the BT, but was surprised that it would last as long as it did for your Son. I guess the next stage of treatment depends on the combined impact of the heart defects, doesn't it. Leo doesn't have TGA, but has Double Outlet Right Ventricle/Fallots type, with severe (their words)Pulonary Stenosis, and also an AVSD (common with Down Syndrome, which Leo has).
Is there anything that you think I should ask if/when I do get to speak to Conal (who's our hero too!)
Lastly, 'street dancing' - I'm not laughing. We live in Brighton and ANYTHING goes!!
x
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