3/2/22

I contacted our transplant coordinator. I asked if she could give our donor family my email address. One of the things our donor family requested was pictures. It would be way easier to exchange pictures via email. So we are working on that.

Ethan had an endocrine/ neurology appointment.  He was the youngest patient by about 60 years. This appointment was to discuss the mass/cyst in Ethan’s brain. We are transferring Ethan’s neurology/endocrine case management from NYC to Rochester. We are also going from Pediactric to adult with this management on the recommendation of NYC endocrinology.

They aren’t overly concerned about it. Ethan had to have extra lab work drawn and then we need to schedule a brain MRI. Of course I wanted to know if they planned on using contrast because Ethan’s kidney values are slightly high still and contrast is nephro (kidney) toxic. They want to err on the side of caution and will consult the kidney transplant team. I told them if they used contrast they were going to have to give him iv fluids afterward to flush him out. This is not our first rodeo.

I do find myself tense and anxious with these new appointments. I want to make sure they have all the information they need but also make safe choices for Ethan.  Not that they wouldn’t but one piece of missing information could be harder than it needs to be for Ethan.

They told us likely after initial testing we will only have to follow up yearly for case management. That sounds good to me. Ethan would prefer to just skip all of it.

I had two other appointments after that one. I have found that my eyelids are quite heavy and am going to bed.