Annabelle is stable on CPAP this morning. NO ventilator, thank Jesus, and our sweet, wonderful RT lady took the ventilator out of the room so we didn't have to deal with its ominous presence anymore.
Plan is to try and wean CPAP today (potentially tomorrow as well if need be) and try to go back on vapotherm by tomorrow or day after that as long as she is still doing well.
We are getting an echo today to make sure no heart changes initiated her issue yesterday.
Still not sure what to think about yesterday. Our usual indicators weren't there... her blood gas levels are usually not good, and they, while not GREAT, weren't horrible either. Her incidents are usually initiated by a fever as well, and she's been fever free for over a week. Her Xray was unchanged as well, and many times it is shows wetter lungs too.
So yesterday's issue is still puzzle. Evidently she looked so bad that they even called and consulted her heart surgeon as well, which in my mind, is the equivalent of "bringing in the big guns." Or in this case, talking to them:-)
Doctor's rounds this morning were a little disheartening though. I think at this point, it isn't a matter of "if" she decompensates and needs to be ventilated, but more like "when." It's a very hard thing as a mother to know that we are just sitting and waiting for her to get worse, and besides waiting for a heart and waiting for an answer from Boston (which is just more waiting), there isn't much I can do to help it.
We've waited for a lot of things during this process. Waited for her to be born. For her first surgery. During her surgerys and Caths. For her to come of the ventilator (times about 8 to 10 times or more, I lost count.) For her to go up to the floor. For her to go home.
We've always waited for these good things with eager anticipation. But to know we are waiting for her to get worse now... It's more than a little scary.
But God is still in control. He is still on his throne. He knows our pain and our frustration. More importantly, he knows Annabelle's pain and her hurts. He knows how hard it is for her to breathe good, for her heart to function enough to supply her body with the oxygen/blood it needs. He gives her strength for each day, as he does for Scott and I.
We are believing that He will continue, and that we will have answers in His perfect timing.
But even while I know all this, the wait is not easy. It is long, it is hard, it is grueling.
But I don't think God ever told us life would be easy, hmm?