He got his NEW HEART that’s right Cameron Ethan Harris was gifted a new chance at a full life when a family made the selfless decision to #donatelife in their darkest hour. Our family is so emotional, it's a confusing feeling to be so ecstatic for our family mean while grieving with our donors family.
Since my last update so much has changed. Cameron and I arrived here in Palo Alto, Ca on June 22nd 2016 for a quick trip to get a heart cath to determine how severe his heart failure was and when his next surgery would be, as well as a g-tube placement surgery to help with his feeding intolerance and oral aversions likely caused by long term use of an NG tube. Surprisingly given Cameron’s notoriously naughty nature, the heart cath went smoothly and we were given an approximation of 6months to a year before he would need another open heart surgery. (Woohoo) Gtube placement however changed Cameron’s course and our lives forever. Cameron’s gtube perforated his stomach and small intestines. This caused major sepsis that resulted in Cameron being intubated for a total of 47 days, a 127 day straight stay in the CVICU, multiple surgeries and procedures to save his life. He fought to be here and against the odds he made it through last summer. Unfortunately the sepsis damaged his already frale tricuspid valve to the point it was unrepairable, that coupled with multiple clots from central lines made his much needed valve repair then fontan no longer an option. This meant if we wanted to give Cameron a chance at a longer life and a chance to be a kid outside the hospital we would have to list him for a heart transplant. The alternative was not an option for us.
On November 9th 2016 we officially listed Cameron status 1A on the heart transplant list.
What this means for our family is for this last year our family has been torn apart. I'm here with the youngest 3 kids meanwhile the older 3 are with their respective other parents while we travel this journey. Our goal is to maintain a foundation for everyone to come home to so that's what my husband, Cameron's dad, does each and every day. This has been one tough journey. I have spent my days raising 3 toddlers (ages 3,2&1) in a hospital room/ RMH room. I have advocated relentlessly for the best interests be it developmentally, physically or logistically. We have become family with our hospital from nurse’s to doctor’s to sitter’s to administrator’s, child life specialist’s to house keeper’s. Throughout it all he fought to be here and after over a year inpatient & 255 days on the transplant list we got “The Call” on July 21st 2017.
The last 2 days have been a whirlwind. Im exhausted yet on cloud nine. Cameron received his new heart and is doing so good. For the first time in his 2 years of life he is pink and satting 100%. There are many little intricacies into whats going on in his recovery and whats to be expected. Tonight he is comfortable and we are hopeful we can keep him that way and get him extubated tomorrow. I'll continue to post on FB as well.
Please if you find it in your heart to share our journey or donate to our family just know you are helping a family reunite and thrive. We are so very grateful of all our you love support and prayers.
BEGINING OF OUR GOFUND ME
In the coming months Cameron is due to travel from our home in Arizona to California for a Heart Cath procedure as well as a Gtube placement surgery. Unfortunately due to the amount of time we spent initially in the hospital we are no longer eligible for much help from them to get to and from. We are asking that anyone that has the capability to help us get Cameron to and from these much needed procedures to do so. Our baby's life literally depends on it. If you can not donate please share our story!!!