What do we do during and after our 1 y/o daughter's heart surgery?
August 11, 2014 8:37 PM Subscribe
So....after months of prenatally following our daughter's heart issues and a year of post-birth cardiology visits it was determined that she did in fact need to have surgery to correct her issues and we are trying to keep it together while we wait for her surgery date and wondering what we can expect the day of and days following the surgery to be like and we can/should be doing for her and/or ourselves.
posted by eatcake to Health & Fitness (8 answers total) 1 user marked this as a favorite
In short, our daughter, who was diagnosed prenatally with Down Syndrome, has a handful of congenital heart defects which include a PDA not closing (Patent ductus arteriosus), VSD (Ventricular septal defect), ASD (Atrial septal defect) and tricuspid valve regurgitation.
The rational part of our brains knows that she will more than likely come out of this surgery better than she goes in, and that the better than 97-98% success rate with 100% survival rate/chance of full recovery statistic sounds great but I think we're beginning to feel the stress of it all start to creep up on us because after all they are going to cut into our baby.
The surgery is a week from now and the surgeon comes recommended and I'm sure he and the whole surgical team knows what they're doing but I feel like we need practical advice and tips on how to deal with it all.
For example, I know it will be hard to keep from being sad on the night before and morning of the surgery so our plan is to be strong for our babycake so she doesn't feel any stress going into the surgery. I believe the surgery is scheduled to last about 5 hours with about an hour of cleanup. We'll be getting hourly updates from the surgical liaison but in the meantime do we just sit around and twiddle our thumbs?
Once she comes out of surgery she'll be taken to the cardiac ICU for hopefully less than a week and then to a regular recovery room for another week or two. She'll be intubated so we're told that even though we can see her in the ICU, for obvious reasons we wouldn't be able to hold her. She will most likely be sedated for a day or two to allow for healing (because she's 1 and she likes to roll around) but what about the rest of the time in the ICU? Do we want to be there alongside her 24/7? Do we (or one of us) sleep at the hospital to comfort her? Will she be fed via IV the whole time or will we be able to feed her ourselves?
What about when she's in the regular recovery room? It will be a shared room with one other patient so I'm assuming that by the time patients get to this stage they are recovering reasonably well? Do we stay there for comfort and try to not to get her agitated or ... what?
One good thing is that I work at the hospital where the surgery will take place so even though I've taken time off from work, in the second or third week I can conceivably go back to work and still be able to visit her many times during the day. The hospital is one of the best in the US (possibly the best depending on who you ask) so we want to believe that everything is going to be alright but damn it if we're still not scared.
We have yet still to meet with the surgeon (we'll meet with him at the end of the week) and I know we can (and will) ask him all these questions but I'm hoping that if someone has been through this with a young child they can provide us with some tips on how to maintain some semblance of control over this event.
Thank you in advance.