In the meantime, Nathan is getting platelet transfusions every other day at this point with specially matched platelets (which don't deem to make a huge difference at this point over non matched platelets) and red blood cell transfusions every two weeks give or take a couple days. His body is eating up platelets at a rapid pace and that is specifically what is keeping us so close to the hospital. They are letting his platelet level get down to 10 or lower before transfusing him. If he only needed transfusions a couple times a week, we could do all of this from home.
His current medication regimen is meant to hold his over active immune system at bay and minimize the damage while they make a complete diagnosis. His meds include:
- Methylprednosolone - immunosuppressive steroid
- Tacrolimus - another immunosuppressive targeting T cells
- Ursodiol - a bile acid supplement to aid the gall bladder
- Lansoprozole - acid reflux medication due to the steroids
- Magnesium oxide supplementation
- Mouth care rinses as needed to control any oral bacterial growth.
The above will be changed based on the official diagnosis, but the basic idea is to calm down his immune system. If he has HAAA, they will add a medication called ATG, or go straight to a bone marrow transplant. If the diagnosis is HLH, they will change him to a different steroid and add a chemotherapy drug called Etoposide. Or it could be something else entirely, they are not taking any possibility off the table at this point.
On another note, Camryn woke this morning with a cold so they left for home a day earlier than expected. It is tremendously difficult for all of us to be apart yet it's also the best thing for us all... Jay gets more work done at home or can go into the office, Camryn gets a slice of normalcy and space to process everything at home, Nathan gets some much needed down time and I get to continue to hyperfocus on his needs for at least a few days each week.
No comments:
Post a Comment