Good evening,

Annabelle was extubates yesterday around 10AM, her team decided it was as good of time as ever and she handles the initial extubation very well. One thing we noticed was she was having extra bloody secretions and her cough wasn't as strong.

The blood was found to be from her teeth. Without her tube she had started to grind her teeth and gums together causing her gums to bleed. Since she is so anticoagulated for her VADs she just kept bleeding. This caused her to struggle with the secretion load which led us to suction her throat and nose quiet a few times. 

The suction caused her throat to be raw and made her not want to couch. All these things put together on top of her being more active since she could safely do so caused quite a problematic night.

At around 6PM her respiratory rate was in the high 60s to 70s. Something that is very abnormal for her. Next she started having work of breathing and head bobbing. Once again a bad sign, and a worry that she wasn't able to fulled expand her lungs. 

Her team jumped in quickly and raised her vent support and sat her up to help release some presure on her lungs. Her blood gas came back good, but her lactic acid was elevated. They did a chest xray to confirm her lungs were still open and that nothing had changes since the morning. 

Thankfully her xray looked almost unchanged and it was decided to watch her closely and see if she could get herself calmed down and comfortable. Luke and I stayed with her till 11:30 before we finally said "we have to go". There was nothing else anyone could do, it was all on Annabelle. 

It's hard to leave your child when they are doing well, it's torture to leave when they are struggling. But I knew if she needed to be reintubated she needed it and nothing else we did would change that. We went to bed knowing they would call us if it happened.

No phone call came last night. 

I was worried this morning I had missed it but when I came to her room at 8 she was happy, comfortable, and breathing in the 40s to 50s. 

I'm so damn proud of her, I know it takes a lot for her to do simple things we think nothing of. She shows us every day that she's got a lot of fight in her even when she shouldn't have to. 

I'm happy to say he is now 12 hours of comfortable extubation and finally sleeping. I'm so thankful for her nurses and doctors last night and everything they did to help her through this tough extubation. 

Praying we can keep this up and finally get to 10kg so we can get our miracle heart. 

Love, 
Sidney & Luke