Saturday, June 21, 2014

Day +22 Exciting Day! Ryan got to breathe fresh air for the first time in a month.

Ryan's platelet count was 6 digits for the first time today  (114,000) and his ANC has climbed into the normal range for his age (2684).

The transplant team decided to slowly start weaning him off steroids. Also, there was talk about a possible discharge mid-next week. And... We unexpectedly received a 4-hour pass out of the hospital today!!!

The funny part is that we didn't know what to do at first. We have to avoid the general public, but we don't get access to our apartment until Monday. We ended up going with Grandma Terry and Grandma N to a nearby park. We had to take several precautions - Ryan had to be covered in sunscreen head to toe, he had to wear a hat, and he also had to wear a mask as he was wheeled through the hospital to avoid germs from anyone sick we might pass in the hallways. We took Purell, anti-bacterial hand wipes, and Clorox wipes. Most importantly, we had to make sure there was significant distance between Ryan and anyone else at the park (especially kids). It actually worked out.

My favorite part of the day was seeing Ryan get excited at the park and start running for a few seconds here and there. It is hard to believe that only five days ago he couldn't even stand up for more than a few seconds!

I am continually amazed at the miracles I keep witnessing. Every morning, the first thing I do is ask for a copy of Ryan's labs. I feel like a kid on Christmas morning who can't wait to open gifts. Then, I stare in amazement at the numbers I am seeing.

For a year now, the numbers on Ryan's labs always went down. It got to the point where I was really just interested in seeing his numbers so that I would know what type of blood product(s) to expect him to get that day, how long we would be at the clinic getting transfusions, and how careful we had to be that week to avoid hemorrhage and infection.

Ryan has had over 50 blood/platelet transfusions, each taking several hours. Today, it finally sank in that he may never need another one!


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  2. Hello Patrice,
    My name is Esther and I am the author of "out of nowhere" own journey with severe aplastic anemia. I have just found your blog and am very excited to read about Ryan's progress. I feel as if I am reading about my own experiences. I am sending positive thoughts your way for Ryan's continuing improvement. Kind regards, Esther