Day +9

This morning has been great compared to yesterday. Jason is still weak, tired, a little frustrated, and his body and face are covered in blood spots from having low platelets consistently over the course of several days. However, he was able to get up out of bed for the first time in three days. He walked to the end of the hallway and we had hot chocolate while he watched the sun rise.

Jason is also talking to me more than he has in a while. Yesterday he was put on a pain pump so that he can control his own pain medication and that has helped significantly. I also believe that his headache has improved because his Tacrolimus has decreased. I just wish they could continue to lower his dosage or skip it completely but this is a drug that transplant patients are taking for quite some time after transplant. Those headaches are crippling and, according to Jason, those are the worst days he has had during this transplant.

While on Dilaudid Jason has been quite a comedian though. One second he can be talking to me about how he wants to body build again, and the next second he is asleep while sitting, telling me that, “Those idiots wore purple with yellow.” And that, “Tomorrow is the day we wear yellow.” He also told me that there were mangy muts around our property. Last night’s dialog was the most amusing, saying, “No matter how old you get your hands never grow.” That made me laugh out loud at 3AM.

Today has been a little frustrating only because he has just started to feel a bit better and all of the nursing students want to meet him and help him. Normally this would be welcomed but when you feel absolutely exhausted but you finally can sit up and talk, you do not want to talk to nurses and students all day. This room has not been empty since 6AM and I can tell that Jason’s patience is tested.

While students were in the room they asked all kinds of questions about Jason’s past with Evans Syndrome and ALPS. Finally, Jason just told them that he survived 2.2 hemoglobin; this news was received with a lot of shocked faces. The nursing instructor actually double-checked his medical records to see if Jason was lying. Then, she told the girls that they may never see another person in their nursing career who survives such a low blood count. I just found it amusing that she assumed that we were embellishing our story.

I am just happy that today Jason feels well enough to talk to me and relax, instead of worrying so much about pain. If we could complain about anything, it would be the large, uncomfortable sores in Jason’s mouth that we had discussed previously; these were expected by doctors. Jason needed to stop brushing his teeth, and he uses a saline rinse in his mouth to keep the sores clean. And his nose has been raw and dry so we are watching it for bleeds. Fortunately, his hemoglobin has stayed steady for 24 hours, and his platelet level (although low) has not decreased.

Please continue to pray for us! Thank you for all of the prayers, Jason looks so great today and many have noticed - we know God is helping us.