Sunday, February 7, 2016

Cliff Hanging

I guess I should start by saying that our perspective of "well" has changed drastically in the last week. When we've been asked how Avelyn is doing Sean and I have both been telling people "oh she's doing a lot better" or even "she's doing well..", but it seems to have given the wrong impression. We say this because last weekend and into Monday and Tuesday, we were on the cusp of losing her. So in comparison she is doing well and better but she is still so very ill. 
She is still ventilated and having trouble maintaining her oxygen saturations and temperature. However the swings she has in both aren't usually as drastic or frequent as they were a few days ago. She now requires oxygen with her ventilation nearly constantly to stay within her goal saturation range of 75-85%. Before endocarditis she managed this on room air. 
Blood cultures were taken nearly everyday for a week and have remained negative, which has positives and negatives. The positives are the negative cultures mean she isn't sloughing bacteria into her blood stream that could spread to other areas of the body, and likely that the infectious bacteria is slow growing- meaning not the more nasty bugs that are more difficult to treat. The negatives are without a positive culture the team doesn't know which bacteria they are treating. Meaning- they have to use stronger and more broad spectrum antibiotics than if they knew the specific bacteria. These drugs are harder on Avelyn's system- especially her kidneys and delicate inner ear structures. So the labs have to be followed very closely to ensure the antibiotics themselves don't do her serious harm.
She'll be on antibiotics for 6 weeks. The team would prefer to wait that time to open her up to give her the best possible chance of not spreading infection elsewhere in her body. But she can't wait that long. Everyday she is at risk for decompensating or having a serious event, including stroke. She is still dropping her oxygen saturations to dangerous levels. She has to have an external pace maker hooked up at all times because when she does this sometime her heart tries to give out. She's been "paced" half a dozen times this week because of this. It's terrifying leaving her in this state but she has to have enough antibiotics in her system to treat the infection or the bacteria will just reek havoc somewhere else in her heart after they close her back up. She can't afford that. 
So we're back to playing the waiting game and feeling like we're dangling above a cliff. It's the definition of a rock and a hard place. There's not an easy or safe path. She's so fragile right now. But like I said at the start, she is doing "better". She's not being paced or bagged multiple times a shift anymore. The events are less frequent and severe but they still happen and will continue to until she has a surgical repair of her damages tricuspid valve and heart in general.
This weekend a pleural effusion was added to the mix. So now she's uncomfortable from that often times.
So in short, she's hanging in there and we hope to hold the course for another week and a half or so until her next surgery. Sorry to be brief, there's been a lot going on this weekend. Best wishes to all.


  1. God bless her & Yall. Still praying <3

  2. Shelley and I got to enjoy some Granfma sitting tonite do the kids could get out of the room for a bit. Avie got worked up a few times and we did our best to calm her. She is such a fighter and we are all so in love with this little munchkin ❤️ Please continue to pray for her 🙏🙏God Bless you all❤️

  3. Love and prayers for Miss Avie and for you all.