Support Registry Update

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Greyson has remained on bipap and his doctors are hopeful that he will not need to be reintubated.  

They are not planning to try to wean his bipap today. They are going to continue his airway clearance to try to help clear his lungs out.  They have switched one of the treatments to a shaking vest instead of puffs of air through his bipap.  Hopefully the vest will continue to be effective because he did not like the other treatment very much. 

His bilirubin and liver numbers are continuing to trend up.  BMT is ordering a liver ultrasound today.  They said it might help them tease out if this is the liver disease or GVHD in his liver.   If they believe it is GVHD, they may start steroids to try to treat it. 

Greyson is still on some sedation medication to help him stay calm and he seems to be comfortable.   He is still communicating his wants and needs (like he wants to blanket to stay on him).  He is also watching Winnie the Pooh. 💚🧡🎗️

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Comments

Dede Roberts 2 months ago

Praying for continued improvements 🙏🙏❤️

Justine Hogan 2 months ago

Praying night and day!

Linda DePue 2 months ago

Glad to see tiny improvements. We continue to pray.