Day 4. We have started Broc on Pedialyte overnight at a slow rate and will slowly add a little formula today to see how well he tolerates it.
He had a great time in the teen room this morning. Doing what he loves. Playing music.
Today will be another rest day. He’s body has been through a lot and the team knows that.
Thank you for all your prayers and kind words.
🐸🐸🐸🐸
Day 3. He’s so handsome! Maybe I’m biased because I’m his mom! ❤️
Plan for the day:
- increase meds to keep working on getting him cleaned out.
- continue with IV hydration
- rest
When we came to Cincy a few weeks ago he was tested for a gene mutation that could possibly explain his bilirubin issues. He did test positive but only has one copy of the gene so either the other copy is missing or we are looking at something else. Either way genetics and the liver team will contact us to see what the next steps are. In the meantime everytime Broc’s body goes through a crisis being it a stressful event / illness etc his levels rise and he requires big amounts of continuous IV hydration to keep him stable.
We have been told to sit back and enjoy the ride best we can until they can figure things out for him. It will take a couple days to get him stabilized and out of this episode then they will see how he holds his hydration on j tube feeds and his home regimen of IV hydration.
Thanks for all the love and prayers 🐸🐸🐸🐸
Unfortunately his gj tube has flipped and kinked again so that needs to be addressed. We are waiting to see when IR can get him back to change it out. It may end up being another anesthesia if they decide to clip it down too.
Once we have a working tube and he’s cleaned out we will restart feeds again.
We are also watching labs and working on a plan for home for when this happens again. Which unfortunately we know it will.
Thank you for all your love and prayers. We really appreciate them. Broc is having a hard time with this admit mentally but I am so proud of how he is handling it. He is my inspiration and keeps me going. 🐸🐸🐸🐸
