Tuesday, June 15, 2010

BIG SMILES


"A child's smile is one of life's greatest blessings."



Mason had some very big smiles when 3 very special people drove all day Sunday to come visit us. When Kaitlin (11 year old sister), Ammon (5 year old brother), and Sammi (our "life saver nanny") walked in Sunday to our 'home-away-from-home' Mason was very excited, and happy! He greeted them each with a big hug. Mark and our two middle boys (Preston 9 and Braiden 7) stayed behind for baseball, but will come join us on Thursday also!! We will spend Father's Day weekend all together. Mason and I have been a bit home sick so we've been looking forward to this week. Plus, we haven't seen Ammon since Easter week (9 weeks ago) and have missed his big smile very much!!



Mason's medical needs and hospital/clinic visits continue to keep us very occupied and busy. He is doing extremely well though. Knock on wood! NO jinxing please!!



He is still having issues getting his Cyclosporine level where it should be, as well as balancing out his diuretics. About 2 weeks ago his potassium was way too low so Dr. B cut his Bumex (1 of the 2 diuretics he takes) dose in half , thinking he was ready to come down on it. Because of the high doses of steroids Mason takes, he takes diuretics to help with the side effects of water retention and swelling.



When this change was made Nancy, the transplant team nurse practitioner, told me to watch for swelling in his face, because this can be a sign of effusion (fluid around the lungs). I said "How can I tell? His face is already so round and puffy! (from the steroids and Cyclosporine)" and she giggled. But, I was serious. Poor little guy's face is so so chubby, plus his cheeks get red and hot several times a day. I imagine it's got to be uncomfortable! ( To our post transplant friends: Is it?)



Well, back to the dose change. Over the next week and 1/2 I noticed his breathing getting a little faster and louder. I couldn't tell any difference in his face, but he was starting to cough while sleeping. We discussed it at clinic yesterday and decided to do a chest x-ray. It was a good thing we did! He has a small effusion on the left lung. So back up on the Bumex. He was not ready for that switch yet. Getting Mason off diuretics will be a tricky one, because he was on a pretty high dose of Lasix for a whole year before transplant to help with his heart failure.



The good news is that he also had an echo yesterday and it looked BEAUTIFUL. Of course, I LOVE that kind of news! Mason's Angel Heart continues to be very strong and healthy. I will never go a day without thinking about how grateful I am for this priceless gift from our donor family. Nor do I or will I go a day without thanking my Father Above for the many miracles that have touched our lives along this journey.



Off to spend the day with my kiddos! As always...no news is good news and I will try to update again soon!


"A smile from a child is packaged sunshine and rainbows"


5 comments:

Kyle and Alli said...

Oh my heart is so happy that you will all get to be together finally for Father's Day. It brought tears to my eyes. Almost there right?!

The Simmons Family said...

Enjoy this week with your family!! I'm sure it'll be a great one!!

They'll get Mason's levels figured out soon. I hope. So you can go HOME.

Owen's cheeks get hot and bright red several times a day and he's not on any of those meds (I don't think). It's a mystery and nobody knows why?

Tell Mark.. HAPPY FATHER'S DAY!

Pamela Wiscombe said...

Enjoy your time together at last!!!! And I am glad it is over Father's Day. Easter will be Mason's special day,and Father's day can be a family special day beyond the joy and gratitude for your husband your family can know how much their loving Heavenly Father is happy to see the family reunited. Take lots of pictures so Mason can hold them cose to his heart.

Mindy Stailey said...

WOW!! You all are so wonderful! Mason and your other four are so lucky to have such an angelic Mother. Mason is the strongest little man I know! What a special guys he is! All the BEST!

Jennifer said...

:) have fun week!