Monday

Another rough night last night. She was given pain medication later than normal last night when Grandpa and Grandma Royal we leaving around 8:30 then she woke up around 11:30 screaming so the night nurse gave her some more pain meds. Once she went back to sleep her heart rate dropped to 87 and set off her alarms and scared me awake. They came in and hooked her up to an EKG and by that time her rate was back up because she was awake. The next time she fell asleep it did it again. I was so nervous I didn't want to go to sleep, the pediatrician on last night had me a little freaked out but the cardiologist came in this morning and spoke to me and was not concerned in any way about the drop. He must have come to the same conclusion we did. She was over medicated and just in a deeeeeepppp sleep. They have now taken her off of the oxycodone completely (hmmm wonder what made them come to that decision) she is now only on the tylenol as needed.
She gained weight though, she now weighs 4kg (8 lbs 13oz). We are working with a speech pathologist to get her on a better (any) feeding schedule. She eats every two hours and no set amount. By the time we leave here we hopefully will be a little more structured so when she starts daycare she won't be in for such a shock!
She also had an Echo done this afternoon and the woman doing it said the photos looked great, but the cardiologist would review. I don't expect to hear from him since we rarely see him.
We may or may not be told approx discharge date soon. They said they would do the last echo before discharge so since they did it today I am assuming discharge is coming!