"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"
There has been a trust fund set up on behalf of Mason Andrew Strickland. You can donate by calling or visiting any Wellsfargo branch.https://www.wellsfargo.com/locator/OR by clicking on the "Donate" button below.
Mason Andrew Strickland was born on November 30, 2007! He came 3 weeks early at the American Fork Hospital, weighing in at 5 lbs 8 oz . He is the baby brother to 3 brothers and 1 sister. At 3 days old he became very sick at home. After a trip by LifeFlight to Primary Children's Hospital that afternoon he was diagnosed with a variation of Hypoplastic Left Heart Syndrome. Mason will need at least 3 open heart surgeries before he is 3 years old. He had his first surgery when he was 10 days old and spent 7 weeks in the hospital. He had his 2nd surgery at 6 months old and only spent 1 1/2 weeks in the hospital. Mason also has issues with arythmias which has caused him some scary moments, a 2nd trip by Life Flight, and more time back at Primary's PICU. We feel blessed for everyday we have him here with us. We have created this blog to follow our journey through life with our little broken hearted baby, Miracle Mason (with a few tid bits about the rest of the family too). It's now October 3, 2009 and Mason's story needs be updated. In April 2009 Mason was diagnosed with lowered heart function (or heart failure). From April through now he has been on medications and oxygen to help improve his heart function. In August, with no improvement seen in his echos we began the process to list him for a heart transplant. He is unable to get the 3rd surgery (or Fontan) as planned because of his heart failure. On Sept, 3, 2009 he had his pre-transplant Heart Cath (the last thing needed to list him for a new heart). The results that day have left us heart broken. He was diagnosed with severe pulmonary vein stenosis and is unable to receive a heart transplant. He will now need a heart-lung transplant, if he is a viable candidate. Since Primary's does not have a heart-lung program we are seeking opinions from other hospitals (outside of Utah) at this time. Even though we are extremely saddened with his most recent diagnosis, we continue to find joy in our journey with our special child of God, our sweet Mason.
(In November 2009 we learned of another possible option for Mason. CHOP and Stanford have both talked to us about doing just a heart transplant to his own one healthy lung. At this time we are exploring that option and the possibility of it being another true miracle for "Miracle Mason".)
February 16, 2010 Mason and I (Mom) flew to Palo Alto, California to do a few last tests and get Mason listed for a new heart(heart only!! not heart-lung!!) at Lucille Packard Children's Hospital at Stanford. We are excited and nervous to start this new chapter of our journey.
March 3, 2010 Mason was officially listed on the Heart Transplant waiting list as a 1B status. Mason and I will wait here in Palo Alto until he receives the miraculous gift of a new heart. We miss our family at home very much!
April 4, 2010 (Easter morning) Mason received his new heart. It was the best Easter gift our family could ever be given. We are eternally grateful to his donor family who during their time of loss selflessly gave our Mason a second chance at life.
July 16, 2010 Mason and Mom flew home to Utah to reunite with their family. Mason is still very immunosuppressed in order to avoid rejection of his new heart, but definitely happy to be home playing w/ his brothers and sister!!
January 30, 2012 Mason continues to do well with his new heart. He finally came off of steroids after 18 months in October 2011! Mason is walking with the help of a walker in hopes to walk alone soon. He conitues to have a few episodes of a pneumonia each year, probably due to only having one working lung. He also has a few new issues we are facing .....sleep apnea and severe scoliosis. But, over all he continues to face life with a fight and a big smile!
April 11, 2012 Mason had back surgery because his scoliosis had worsened to a curve of 75% (normal is 0-15%). He had two rods placed in his back, better known as the VEPTR (Vertical Expandable Prosthetic Titanium Rib). It was a rough recovery, but after about 8 weeks he was feeling much better. Every 6 months he will go in for a minor surgery to extend the rods to keep up with his growth.
May 25, 2012 We finally got into a sleep doctor and she diagnosed Mason with sleep hypoxia, rather than actual apnea. Because of narrow airways his sats dip frequently through out the night, but he doesn't completely stop breathing (good news!). So he was perscribed to be on one liter of oxygen at night while asleep.
July 20, 2012 Mason finally walks all on his own!!
Not a day goes by that we don't think about Mason's donor family who has given our little miracle boy the gift of LIFE! Thank you where ever you are!
Please Grab Mason's Clickable Button! Just Copy & Paste Html code into a gadget on your own BLOG!