His fluid levels are hopefully starting to work out much better now. Today is the first time in 3 weeks that he has been able to consume his required amount of liquids orally! This is outstanding and leads to a good working system going outpatient. Still some time dealing with a bladder filled with BK Virus, next prednisone reduction on Thursday (I got the days mixed up). That drug is extremely potent and has side effects that I don't want to think about. We just keep praying that every time we reduce it, his body holds up with the GVHD. He definitely has a Grade I skin rash. It comes and goes, and hasn't resolved completely yet.
Since he had a pericardial effusion last time, we are keeping an eye on him closely for the symptoms. So due to this continued fluid imbalance and most notably adema in the extremities, we requested an echocardiogram. Side note, his blood pressure has been really good this time, so that has not been a worry (this was a huge issue last time). We confirmed with the test today, that he does not have fluid around his heart. He was blessed to have the test performed by a Fellow (as opposed to a tech), so we got some immediate results.
It was a super great view of the peony garden from the 11th floor!
We had a very exciting day in the room playing the board game 'Life' - of course, Molly wanted to be the "superstar" as her profession. I think she may need to get into acting. She is an extremely creative and beautiful child... and she does test our patience a bit, you know, she is a bit feisty. Xander and I were very patient with her today at the hospital. I did have to wheel her in the chair, behind the curtain, for some quiet time though!
Peace and Love to all of Xander's followers,
My boys are, both, lookin' great!!!! I love you guys...and Em and Molly.ReplyDelete
Nice picture! We hope today got off to a better start than yesterday. Congrats on the fluid intake, and we're happy that your heart was looking good and that you have a good appetite. We're all thinking about you and sending lots of love your way!ReplyDelete
And, yeah, Molly and Superstar seem to go really well together!
Ethan, Margo, Ruby and Jasmine