Tuesday, December 1, 2009
Yes, so the big day is getting very close and my nerves are sky high! T minus 12 days and counting. Here is a pic of her above; pre-scar. Everyone keeps telling me to make sure to get lots of pre-scar pics.
Yesterday (Monday) Caydence had another chest x-ray and met with her Cardiologist again. She is still showing signs of heart failure, but it hasn't gotten much worse since we saw him two weeks ago. Her heart is still a little enlarged and she still has excess blood in her lungs.
Tomorrow (Wednesday) she has a sedated echo and EKG. She is always really squirmy when she gets her echo's done and the pictures were just a little grainy, so they want to sedate her to get better clearer views before the surgery. Which is definitely a good idea!
She can't have any milk after 8:30 am and then her appt is at noon. They said they will probably use chloral hydrate which I guess is common and she'll only be out for an hour. Just long enough to complete the procedure.
Then Thursday we meet with a Hematologist to make sure there isn't anything special they need to do for her surgery in regards to her clotting disorder.
We were supposed to see her Pediatrician next Wednesday for her 6 mos check-up and vaccines, but her Cardiologist said that during her surgery, the heart lung bypass machine would just wipe out the vaccines, so it would be better to just wait until after surgery (probably January) to get them. Same with her RSV shot she was supposed to get, but they will probably give her that one in the hospital soon after her surgery.
So next Friday is her Pre-Op day where we get a tour, meet with the anesthesiologist, do some last minutes tests/blood work etc. and make sure everything is ready for the big day.
We have already got our referral to stay at the Ronald McDonald house. So hopefully they have a room available. We're supposed to call the morning of her surgery. If they don't we can stay at some local hotels for $10 a night (Same as the Ronald McDonald House) until a room is available there.
They say that one parent can stay in the hospital, but Caydence will be in the PICU and they only have 5 sleeping rooms for PICU parents. Understandably priority goes to parents of the most critically ill children. But at the same time, we were told this is their "slow" time of year. Most children get major procedures done outside of RSV/Flu season, but Caydence can't wait that long.
Hopefully she'll be home for Christmas. That would be the best present in the entire world!
Posted by Jenny at 10:30 PM