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Posted by Julie
on October 27, 2009, 20:14:13, in reply to "Re: Leo heading for Rastelli (maybe)"
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Hi again Pippa, gosh this is all stirring up some memories, have had a good sob this afternoon, very cleansing actually, haha. Where to start.... Oscar was born at Guys, I was induced 2 wks early and we had a pretty good idea how things would go from there, or so we thought. It was at the time when St.Thomas's was having extensive refitting so births were all at Guys. He went straight to NICU and had the afore mentioned septostomy, I was moved onto the makeshift maternity ward(28mums, 27 babies, you get the picture). He did very well post septostomy and somehow after 5 days ended up on the ward with me!!!!!! bypassing special care. We were told by a maternity registra that we could take him home, we insisted that clearance came from the cardiac team. They were a little surprised to find Little O nearly out the door and moved him straight to Special Care, by this time he was 8 days old and not very well. They opted for stabilization prior to the shunt, taking us to the 16days. We too were told this was a very temporary fix, 9mths at most. While Oscar had the odd problem we managed to keep everything calm, but Oscar was VERY sedentary and VERY small. To be honest I'm convinced thats how it lasted so long. Every 3 mths when we went to see the consultant, we expected surgery to be imminent, as did they. But he did infact last 3yrs.
As you said in one of your previous posts, it does appear to be a rare proceedure on children and we had no one at all to liase with and altho we had known for ages thats what was going to happen, we did find ourselves in the exact situation as yourself, the night before surgery, terrified, confused, stressed and way too many questions. I do remember however Conal hinting that we might get 7 or so yrs. Don't take that as gospel however.
Immediately post the re op, he was saturating at 97%(I thought something was malfunctioning). He is consistantly in the mid to high 90's. As to his energy levels, he is known in the family as the ever ready bunny. I would have to say he appears to have more stamina than most of his peers. But, when he crashes, it's fairly catastrophic. Luckily, this doesn't happen very often, maybe 4 times since the Rastelli. He loses the ability to concentrate, goes almost see thru & has a smell, similar to that of a diabetic, ketotic smell. Within a few hours of the onset of symptoms he can be all but unconcious, sometimes there's vomiting. Twice he has been hospitalized but I think the recovery would have been the same at home, within a day or 2 he starts to improve and always back to normal within 4 days. our GP and paeds at our local hospital and the consultant all feel that for some reason he doesn't register he's getting tired and eventually he just shuts down. I'm under the impression that this is "Oscar" and not necessarily what other rastelli patients do, as you say, they're all different.
Just reading your message back, I forgot to say, Little O's stenosis was also tagged "severe".
I hope you don't mind me saying, but I find this all the strangest turn of fate. Prior to O's Rastelli, we kept up with Echo, but afterwards I couldn't stand to hear/speak anything about it. I did go on to have another baby, but 6 wks before she was born, their Father and I spilt up, hate to admit it but it was due to the stress of Oscar and our fear for & of him. All has been calm for the last 4 yrs, he's healthier and happier than we could have hoped for, he has a great relationship with both of us and his sister. I however am still truely traumatized and shy away from any situation where someone might ask how everything is going. Today is my first visit to the website and that was only because Oscar was going for his flu Vx and I wanted to check the scoop on Swine flu. I nearly wasn't brave enough to hit the message board button, didn't want to stir up memories, but I did click and the first thing I saw was your post looking for other Rastelli parents and to top it off, you live less than 20mls from us, we are in Crowborough. I think if I have helped you in any small way, then I've gone a long way to curing myself. The next few weeks will be very tricky for you all and something I wouldn't wish on my worst enemy, but all things being well, it will be your 2nd start and by x-mas the clouds will be lifting and Leo really will have a new lease of life, just as he and you deserve.
I will be thinking of you next week, please let me know if there's anything I can do, Kindest regards, Julie and Little O.
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