Delayed

We didn't go home today, and we likely won't for several more days. Here's the latest...

For most, if not all, of the time we've been off the ICU, Alivia has been experiencing brief "pauses" in her heartbeat once she's in a deep sleep, usually overnight but occasionally during a long nap. It only recently caught the attention of the doctors, primarly because one of the pauses was a bit more than "brief," so today the teams involved with Alivia's care brought their heads together to figure out what the best course of action is. Right now, we aren't sure why her heart is doing this. The most reasonable guesses are that A) it's always done this, but the IV med masked it and once that med worked it's way out of her system, the "pauses" came back, or B) a new drug she began Tuesday that lowers her heartrate is causing it, or C) a combo of both, in that the new drug is aggravating an existing problem that the IV med had masked. I think A or C are most likely, as I'm fairly sure she had a few "pauses" before beginning the new med on Tuesday.

Our first steps will be to cut off the new med to see if that is the cause since that is the least invasive solution. The docs are happy with how she's doing, and she's on such a low dose of the new med anyway, it's likely she won't do poorly without. We'll see how her heart acts overnight for the next couple of nights without it in her system. If it still acts up, we will have to let them install a pacemaker. Yes, that's scary. Surgery isn't a good thing. But, if it will keep her heart from stopping to beat, then it's the best solution. Though we'll be out of our minds with worry if/when she has it installed (estimated time would be the end of this week once we rule out the med theory mentioned above), it actually will provide some peace of mind for us at home, knowing that it will keep her heart functioning as best as it should. Some of you have asked if she'll come home with a monitor, but they tend to not do that here, for several reasons that make sense.

This is all just another reminder of how truly ill our daughter is. It's so hard to accept that fact, especially when she's so happy and smiley. She still shows signs of her heart condition - she may do so for quite some time - but she's so much better than she was at this point three weeks ago. Doctors were ready to send her home and even the cynical ones were very happy with how she transitioned off her IV med. But then this popped up. As much as we want to be home with both of our kiddos to resume some form of normalcy, we now know it's a good thing we have stayed here so long, so all this waiting hasn't been for nothing. We trust that the doctors are going to make the best decisions, so we'll continue to pray for their wisdom and good judgment, and for God to continue providing Alivia with strength to endure whatever lies ahead this week. Please, please protect her.