Sorry for not Updating

Sorry for not updating sooner ... I really haven't had the energy or the words. (Sorry if that sounds whiny, it's just what it is.) The ENT follow-up was what we expected in some ways, but not what we expected in others. Be careful what you assume! I assumed they would be able to do the throat-probing at the same time they did the CT scan (i.e. with the same sedation) and that's not the case. I also hoped that they would be able to "fix" any problem they found in Annie's throat at the same time ... again, that's not the case.

As it stands right now, Annie is scheduled for a bronchoscopy (the aforementioned "throat probing") to check for a laryngeal cleft on January 16. The procedure itself should only take about 10 minutes, but we were told to assume we will spend the night at Children's after the procedure. Any sedation for Annie is a risk, so they plan on her spending the night to make sure she is ok after the procedure. Plus, her risk of aspiration means that an anesthesiologist will have to be present. (For her cardiac catheterization, the nurses were able to manage a minimal level of sedation for Annie. Now that her aspiration issues are known, an anesthesiologist will have to manage her sedation -- no matter what the level -- to monitor her and make sure she's ok throughout the procedure.) Dr. Smoot will schedule an echo for our pre-op visit the week before the procedure, just to confirm Annie's heart is still headed in the same (positive) direction.

If they find a cleft, we were told it is a complicated procedure to repair -- something they would do at a later date. In talking with Annie's cardiologist, we're not certain that we would go for a lengthy procedure at this point in time. So I guess the bronchoscopy will tell us whether or not it is a structural issue, but we may or may not move forward with repairing it. Annie is handling thickened liquids well according to her swallow studies, so we may just keep doing what we're doing one way or another. (The kid is addicted to water, though. She is obsessed with every water bottle she sees. I swear she knows she isn't supposed to have it! Any other kid and parents would be begging them to drink more water. This one we can hardly keep away from it! The water bubbler in the middle of the kitchen is a HUGE source of stress -- she knows water comes out of it and she WANTS SOME!)

The plan right now includes going back to Children's on March 10 for Annie's CT scan (which may also involve an MRI, depending upon how the CT scan goes). I'm not 100% sure that we're going to go through with the CT at this point. The ENT wants to confirm whether or not Annie's dimple in her nose is a dermoid. At this point, I just can't imagine putting her under (with another IV, another night in the hospital, etc.) for the outside chance that Annie could have a dermoid. I don't mean to second-guess the doc's expertise, but I am not convinced that it is in Annie's best interest to sedate her again for this procedure. We're still figuring out what we're going to do on this one, and luckily we have some time to work it all out.

Meanwhile ... I'm trying to get used to the idea of Annie going through another procedure. I keep telling myself -- and everyone who asks -- that it's not a heart transplant. But sill ... the idea of going through an IV and the risk of sedation with Annie at this age is just ... yuck. It has its own issues, just as going through the cath when Annie was so tiny had its own issues back in March. I just can't imagine it right now, but I know I couldn't imagine going through the cath with a 10lb. baby, either. We'll get through it. I know we will. That doesn't mean it won't make me nauseous between now and January 16, that's all.