Sweet Support/ Paul Cardall's Gift to the Heart Community
Thank you to all of you for leaving comments on the blog, texting me, or e-mailing me with sweet messages of love and support since my last post. It truly means a lot and is helping me get through this time of very important (and emotional) decision making!!! Many of you even sent me your favorite scripture or quote! Thank you Thank you!
These two especially have made very strong impressions on me:
“Be still and know that I am God.”
"Faith makes things possible, not easy."
Also, I wanted to let everyone know about a very kind thing Paul Cardalland his wife are doing for our Utah heart community. I copied and pasted the following post from his blog, "Living for Eden":
"As I waited for doctors to find me a new heart, my community and colleagues in the music industry organized a benefit concert for our family. I wish every family in a similar situation could experience what I felt that evening.
This is why I am doing The Celebrate Life concert at Abravanel Hall on February 15, 2010 in Salt Lake City and rewarding a scholarship to an individual affected by congenital heart disease (CHD) and a financial gift to an angel family affected by this disease.
According to Senator Dick Durbin and the American Heart Association, “A child is born every 15 minutes with congenital heart disease or CHD.” Despite this sobering statistic, the great news is that most individuals born with CHD now have the medical resources available to help them live longer and enjoy the benefits of growing up, getting an education, falling in love, getting married, and raising a family.
I am living proof of the possibilities and want others to experience my happiness.
Therefore, I am extending an opportunity for individuals affected by CHD (whether you are an immediate family member or have been diagnosed with the chronic illness) to apply for a 1-year tuition free scholarship through my local Salt Lake Community College for those affected by congenital heart disease. I understand the costs associated with having a chronic illness. Education often takes a back seat because of mounting medical bills. I don’t want anyone to be denied of an education because of his or her financial situation."
***We have a meeting this week at Primary's with Mason's heart surgeon , Dr. Kouretas, the head surgeon over Transplants, Dr. Kaza, and Mason's cardiologist Dr. Everett. We want to hear their opinion about Mason getting a heart transplant to one lung at Stanford. We also will be talking with Dr. Rosenthall from Stanford sometime this week, to help answer some of our questions such as; how soon he really thinks we should come, quality of life after Transplant (especially because of Mason's 1 healthy lung situation).....with what he has found from his research, Mason's status when listed ( the plan is 1b , which is 2nd priority)......but, we figure if Mason and I are going to jump into this with both feet and leave our family for a while, then let's just admit him to the hospital, list him as 1a, and get him his heart sooner!!! We'll see what he says?!! I will post later this week with some details about our meeting and phone call.
Mason also has a cardio check up this week and an echo......which will hopefully give us an idea of how his heart failure is. Whether his function is the same, better, or worse......helping us decide on how soon we really need to get the Transplant ball rolling!!
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!