Wednesday, May 5, 2010

A few Smiles

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!


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


madelyn said...

I am praying for today's test and good news!!! It is amazing how the skin, hair, nails - even teeth - improve once the heart is healthy and strong. Keep on moving forward and closer to home. Thanks for sharing the journey and adorable pics.

Melissa said...

I know we don't know each other but I have a heart baby also (Tetralogy of Fallot). Mason is such a brave strong boy and he is absolutely adorable! I will continue to think of you and Mason and keep my fingers crossed that his test showed wonderful results.

Maccoy's mommy

Moffitt Fam said...

He is so sweet! He just looks like he wants out of that hospital so bad!! I have to let you know my oldest son , who is 11, knows I follow your blog and when he found out Mason was having rejection he decided he would fast for him a couple of weeks ago! He just thought of it all on his own! I think he holds a special place in his heart for sweet kids like Mason because of his own baby brother who has HLHS. Sorry for the long comment, I just had to share!!

Bob and Joan said...

How delicate the balance of all Mason's care down to getting a good nights sleep. Even the smaller things are difficult. We will continue to pray for a good outcome on all the tests.

Emily@Little Forever Family said...

Love these pics!!! We are starting to see more and more of Mason doing the fun kid things, and not being tied down with lines and tubes. Hopefully the biopsy went well and there is good news, because that is what we are praying for!!! Thanks for the updates Summer, we love to hear how things are going!!!

Justin and Victoria Nelson said...

so happy to see he is in better spirits.
loooove the bed head. he is looking like moriah's twin =)
continued love and prayers,

The Simmons Family said...

I am SO glad to hear about the SMILES!!! The eating, the high fives and SLEEP! :) Horray for it all!! Praying for Mason today during his biopsy and hoping for great results so you can finally get outta there soon! I'm sure you'll both rest much better on the 3rd floor.

Dianne said...

I will pray for Mason to get good results tomorrow. I will also pray for both of you to get a good nights sleep. Thanks for the update.

Keri said...

Cant believe even his hair and nails grow faster with an angel heart! amazing!
He looks JUST like Mark in the picture of him reaching for the camera. So cute.
glad he is happier. praying for you all!
Happy happy Mom's day, sum.