Today I finally got a few smiles out of Mason! It made me so happy that his spirits were a little better today. He finally got some decent sleep last night with out being super groggy today. 3 nights ago the doctors tried him on Haldol (actually an anti psychotic med which also can help with sleep) but after 2 nights using that to help him sleep he was cranky, irritable, and very sleepy most of yesterday. So last night the Dr.'s tried him on a very low dose of Ambien.........and he slept sooooo much better and woke up happy.
He smiled and got very excited each time we mentioned 'going on a walk'. He also smiled and laughed when I played cars on the bed with him and a car would go flying right off the bed. He even gave a 'high five' to a couple of the Dr's today. He still cried inconsolably at times today, especially when new nurses or doctors come to see him, but at least he gave me a few of his darling smiles.
The ANTIBODY LEVEL (DSA) results came back last night. There has been a slight rebound in the bad antibody levels, but not significant enough to do any more plasma-pheresis at this time. Yay!!! A slight rebound was definitely expected, so we will do an IVIg treatment every 2 weeks for several months to keep those down.
Mason's cath/ Biopsy 3 is tomorrow at 7:30 am. The Cath Dr. will also get a good look at his coronary arteries at this time. This is protocol one month post transplant. (Yes! Yesterday May 4 was 1 month post heart transplant!) Prior to his cath Mason will go to the OR at 6:30 am where 'general surgery will place a meda-port either high on his chest or down lower on his belly. I pray they can get one placed, because we will need access for IV infusions and blood draws every week for a long time!
PLEASE PRAY THAT MASON'S CATH AND BIOPSY WILL GO SMOOTHLY AND THAT THE RESULTS WILL BRING NO SIGNIFICANT CHANGES.......PRAY FOR VERY LOW TO NO REJECTION!
Here are a few pictures from the last few days, Enjoy:
Mason likes to help me update the blog and
check my e-mails. He types with his feet and hands!
Mason is getting all of his nutrition
through his g-tube still, but we are introducing
new foods everyday to get him interested in food again.
The noodles he just played in, but so far the last
couple of days he has eaten potato chips, dry captain
crunch cereal, and bites of carrot sticks. It's a start!
Mason was happily coloring today, until I pulled out the
camera, because then of course he'd rather have the camera
than his cool crayons. We had a special visit on Monday
from our little heart buddy Owen and his mom Andrea.
They gave Mason puzzle and some new fun twistable
crayons. (Thank you so much for coming to visit us !!!)
Is this some serious bed head or what? Mason's hair
has gotten really long! Just slightly in need of a
hair cut, you think?!!! His new healthy heart has
helped his hair and nails grow like never before!
I will post sometime tomorrow with results from the heart cath. Have a Happy Day