Well, the appointment today did not go as we had hoped, to say the least.
We got there and Dr. P proceeded to tell us that the sleep study results came back saying Marissa had a few episodes of both obstructive and central sleep apnea. She said based on these results, she would be on the fence about decannulating Rissa. Then she told us that, in about the last six months, she has questioned the results from this particular sleep lab and found them to be not as reliable as they should be. She said there have been several cases where the sleep lab in Colorado Springs said the kids had sleep apnea and then a repeat study done in Denver came back saying they did not, or it was not as bad as the first study said. So, she wants us to do another sleep study, this time at her new hospital in Denver.
I am so frustrated because the study we did two weeks ago was all for nothing. Nothing! I hate the fact that we have to put Marissa through all that again. For anyone who knows anything about sleep studies, I am sure you understand. It is not a comfortable thing for an adult to go through. But for a kid, especially one like Marissa who has very high anxiety about doctors and people poking, prodding, and sticking things to and in her, it is terrifying! I don't want to have to put my baby through all that again. She is getting to the age where she is going to start remembering all these things we are doing to her. I just hope she doesn't start to develop some serious trust issues. I feel so bad for her.
I am also a little perturbed at Dr. P for ordering a sleep study and allowing us to have it done at a lab she does not trust. If she would have just told us to have it done in Denver in the first place, I am confident we would have a concrete answer and Rissa would probably be decannulated by now. I know she has had her hands full with the move of her home and practice from Colorado Springs to Denver, working out all the kinks, but still. I just wish I would have known she did not have confidence in this sleep lab. You can bet I would have not scheduled it down here and would have had it done in Denver instead.
So, we will do this new sleep study in Denver and, if the results come back to where Dr. P feels good about decannulating Rissa, she will have us come back to Denver for a bronchoscopy and decan. Dr. P did say that she does mostly feel Marissa is ready, she just wants to do everything possible to make sure. Because re-traching her would be so traumatizing, for Rissa and us. I can respect that and I am glad she is being so thorough.
If the new results come back negative, Rissa will keep the trach until at least next Spring. Sigh...
I am so frustrated because of the timing of all this. Jeremy was on vacation all this week. That is why today's appointment worked well for us. Starting on Monday, I am going to be watching my friend's little boy during the weekdays. Now, I am going to have to ask my friend to find other arrangements for her son for the new sleep study and the bronch/decan (if that happens at all). I did everything in my power to keep that from happening. I hate having to do that to my friend. Also, Jeremy will have to take more time off of work. Blech.
I know that this is all according to God's plan, and His timing is perfect. But, if He would just follow my plans for once, things would go a lot smoother!
I am so tired of jumping through hoops. Especially jumping through ones we have already had the *pleasure* of jumping through before.
I guess those hoops were just not fiery enough.