Tuesday.

So today was the big day full of appointments. I was worried about it since Monday absolutely wiped Nathan out, but I shouldn’t have worried – Nathan absolutely knocked it out of the park. Yes, he’s exhausted and yes it was a stressful day, but he rose up and DID IT. So proud.

To start off the day, there was an x-ray, blood draw (which didn’t go well), echo, visits with our new outpatient coordinator (Nikki) and the transplant nurse (Trista), as well as a visit with Hematology. In between there, Nathan also had to get a surprise Covid test.

During Nathan’s blood draw, no blood was coming out of his picc line. Crap. The nurse (who was very experienced) tried EVERY trick in the book, including two doses of alteplase which usually dissolves any fibroid tissues covering the other end of the line. Alteplase needs to sit in Nathan’s line for an hour so we had to come back to the lab three times (across the whole Mayo campus) to see if it worked. 

It didn’t.

So now, even though this picc line is only a week old, Nathan has to go get ANOTHER one tomorrow. GAH. Wednesday was supposed to be our “day off” but we figured something weird like this would happen, so we didn’t plan anything. Plus the procedure doesn’t start until 1 p.m., which means he can’t eat until afterward.  Because this new line is a “procedure”, Nathan had to get a Covid test squeezed in as well. Those are not fun. That poor kid!

Nathan walked a LOT today. Toward the end of the day, we commandeered a wheelchair so we could get places a little quicker and without wiping him out completely. He enjoyed that! 

When we got back to RMH, we just chilled. I feel we both deserved it. And I was forced to watch bad YouTube videos, but that’s another story for another day . . .

Wish Nathan luck tomorrow as he won’t get breakfast or lunch as he waits for his new line. I PRAY this one works well. They’re considering putting the line in his chest instead of his arm (less line to deal with) but we’ll see what they say.

One thing the NP Trista said was to start thinking of the future. Down the road, the milrinone will go away and so will the picc line, which means that every 8 weeks or so, Nathan is going to have to have a blood draw with a needle. She warned Nathan that this WILL NEED to happen, and to start thinking of a way to get around it, including finding a medical trauma therapist (anyone know of any good ones in the St. Cloud area?). Nathan understood.

Thanks everyone! I’m so grateful Nathan was able to get through today!

love,
Mary, Brian, Ellie, and Nathan

To learn about upcoming fundraising events and/or to donate to COTA to assist with transplant-related expenses, visit https://cota.org/campaigns/COTAforBraveheartNathan