Greyson had some sedation issues over night. They also had to go up on his ventilator settings.  He is more settled today and they are going to try to wean his ventilator settings.  They are still hoping to be able to extubate in the coming days. 

 

Greyson looks less jaundice today but we are waiting on his labs to confirm this. His bilirubin was very high yesterday and he had blood in his urine.  Thankfully, his urine looks much better today and likely does not have blood in it. 

 

Greyson had an ultrasound of his heart, gallbladder, and liver yesterday.  Thankfully, none of them showed any obvious issues and all seemed unchanged. His doctors do believe that his liver disease (which was caused by his bone marrow transplant and should eventually heal) is active again.  They have started him on the medication that treats this again. 

 

Yesterday, Greyson was delirious and very uncomfortable.  His doctors were highly concerned about a new infection.    Today, they are slightly less concerned because he looks more comfortable, though they are concerned that he is still dealing with an infection or virus that he’s already been positive for.  They drew a bunch of cultures yesterday and have drawn blood to send out for a Karius test to look for bacterial and viral DNA. They are also checking for a particular virus that he has had during this stay.  This virus seemed to have gone away but they are concerned that if he is dealing with it again, it’s possible that it has become resistant and would be untreatable. 

 

His chest x-ray is slightly improved today as well. 

 

There is still concern that his aHUS is flaring up again.   He received the long-acting infusion (that he already gets every other month) last month. This should prevent him from flaring up, but it seems he is flaring anyways.   They are likely going to give him the short-acting infusion tomorrow, though they are waiting on this morning’s lab results before making the final call. If needed, they are able to give this infusion a couple times a week. 💚🧡🎗️