Carla's heart cath and biopsy is set for tomorrow at 10:30 a.m. We have to be to the hospital by 9:15 and no food or liquid after 6:30 a.m. Which means, we will be doing morning meds around 6:15 tomorrow... Hopefully Carla won't be too crabby about that... I think I'll try to sneak her to bed around 7:00, so that she has enough sleep and isn't a meany to Mommy at 6:15 when I have to give her yucky meds!
I feel pretty good about how she is doing in general and this will be one step closer to home. I really hope her heart/lung pressures are good and that we can get her off the sildenafil she has been taking 3 times a day for almost 2 years. I also really hope that there is 0 signs of rejection! I've been feeling so good about her lately. She is doing SO MUCH BETTER with this new heart. It is really amazing what a difference it makes. Her motor skills, endurance, and we think even her mental skills are better than they were... and she was always bright.
We were always discouraged to head towards transplant. It's trading in disease for another... So, when we were told she had plastic bronchitis, which is a sign of a failing Fontan and basically heart failure, it was hard to wrap our heads around listing her. She was capable of coughing out the casts fairly easily and a heart transplant just seemed so drastic! It wasn't until 3 months later, when she contracted RSV and got so sick with the plastic bronchitis, almost died 4 times in 3 days and spent 9 weeks in the hospital that we became very aware that it was necessary to move forward with transplant. And, now that we are on the other side of transplant, I can honestly say it was the best thing we could have ever done for Carla. When she had half a heart every little sickness was a threat to her life. Now, we can get to a point where it's ok for her to get sick. It's ok for her to be "normal" ... go to school, be around people, etc. And, I'm not going to lie, it's still really nerve wracking, the idea of her getting sick and the worry that has been so ingrained in us as HLHS parents. But, as time goes on, those fears will get less and less.
Please pray that things continue to move in the right direction. We are so blessed and looking forward to taking our daughter HOME soon :)