Greyson has had a pretty rough day. He has been in a lot of pain all day. He has been trying to nap but unable to get good rest due to his pain.  The mucositis is getting worse and honestly, will continue to get worse for a little while. Mucositis is painful inflammation that causes sores through the entire intestinal tract.  Because of this, Greyson has mouth sores and is unable to eat, as well as bad pain all the way through his GI tract. 

Greyson has also been experiencing more nausea today and we have cut back on his feeds a bit to try to help.  He will likely start getting IV nutrition as well to make up for reducing his feeds.  

Greyson also spiked a fever today.   His counts are down so that is not unexpected but we still have to treat it like an infection.  So we accessed his port, drew cultures on all his lines, and then started him on IV antibiotics.  

They have been warning us that things would get rough so none of this is unexpected.  His counts are trending down as they are supposed to and that alone will make him feel crummy.  His counts will bottom out and he will start receiving blood and platelets often until Norah’s cells find their way into his bone marrow and he starts to make blood with Norah’s bone marrow (as I understand it).  This will take about two weeks, and then he will start to slowly feel better (Lord willing) 

To manage his pain, they have put him on a morphine pump and that has definitely started helping.  We are also doing our best to stay ahead of his nausea and will probably be switching to a stronger nausea medicine soon.  💚🧡🎗️