[ Post a Response | ECHO Dialogue ]
Posted by Julie
on October 27, 2009, 14:16:30, in reply to "Re: Leo heading for Rastelli (maybe)"
90.198.168.72
Hi Pippa
My son had a Rastelli 4 and a half years ago. The proceedure was done by Conal Austin (also goes by the name of God in our house). It was done Guys as The Evelina wasn't up and running at that point.
Little O was born with Transposition of the Greater Arteries, large VSD and Pulmonary Stenosis, the latter meaning a switch was not possible. After a Septostomy at 8hrs and a BT shunt at 16 days all was kept under control (ish) for about 2yrs. He was obviously heavily medicated and had a few minor hiccups. At 2 and a half he went for an MRI and one of the vessels was starting to kink. A Rastelli had always been on the cards, so we weren't surprised they were pushing to do it now, especially as he "well". Op was booked for a few weeks after his 3rd birthday and after a few false starts we took him to theatre on March 15th 2005.
There is no point me fancying this up for you, as I'm sure you're aware, this is major surgery by anyones standards. O was in theatre for nearly 8 hrs. His recovery however was remarkable, they started weaning him off sedation after 24hrs and he was back in high dependancy after 2 and a half days. He did have a set back and was reoperated on within a week, but it was truely "just one of those things". I felt something was amiss after 4th day at which point they started immediate investigation. After about 6hrs he went back to ICU, from that point he underwent every proceedure imaginable to find the problem. Every big gun in the department was wheeled out and as a last ditch effort the decided to go back in. He was in theatre for another 6hrs and the cause of the problem was addressed. We were in Guys for a long time and did often feel we would go home without Little O, but in total honesty, it has transformed his life. Within 9 wks we were in Australia visiting my family, something which was out of the question previously with his SATS never above 60%. He is of ALL meds at the moment, swims 4 times a week, in a gym club, just taken up street dancing( don't laugh, haha).
He will need the proceedure again, possibly more than once.
Nothing about having a "heart child" is anywhere close to easy, but the support and expertise of the Evelina/Guys team is 2nd to none.
If there's anything I've missed or if you have any questions just ask and I wish you all the very best. Julie.
Responses: