Greyson’s CT last night showed worsening and new infection.  They are concerned that he has a new fungal or mold infection.   They are adding more antifungals and antibiotics to try to treat it. 

Greyson will be heading to MRI soon to get a look at his sinuses.  They would like to know if the fungal/mold infection is in his sinuses as well.   Depending on the MRI results, ENT may come and do a scope of his sinuses as well.  

They have drawn cultures from his intubation tube and have drawn blood to send out another Karius test.  

There is still concern that he is bleeding in his lungs.  They are giving him medication to help stop up bleeds in his lungs. 

There is ongoing concern and conversation about aHUS activity.  We are approaching the day that his infusion is due but they are still considering giving the shorter-acting infusion soon.  

Greyson is very awake and often upset because of the tube in his mouth.   They are working hard to adjust his sedation to make him more comfortable. Part of the struggle is that we had weaned his sedation when we extubated him so he does not have the medications built up in his system. 

The other big issue is his liver.  His liver numbers are very high and have continued to climb over the last several days.  They believe his liver is GVHD and did start treating it with steroids.  However, they think the steroids may have made his infection in his lungs worse as it suppresses your immune system.   They had a long discussion about whether they should hold the steroid treatment or continue it. They decided to give it for now because they believe it is the reason his liver numbers did not rise today.  

They are discussing doing a special, non-invasive liver biopsy.  They are also discussing a temporary treatment for the liver that involves placing a line, drawing out blood from the liver, putting the blood under a bright light to break down the bilirubin, and then returning the blood to the liver.  This would only be temporary and would just help filter out the bilirubin. It would not treat the liver but would rather buy them more time.  💚🧡🎗️

We also want to thank you all for your support after our post last night.  Your love and support for our family is overwhelming 🧡🧡