For my best friend Jacey. I love you so very much, and you of all people don’t deserve what you’re being forced to face… you are an amazing friend (sister in another life) and an even better mom. You and those sweet boys have a special place in my heart, always.
I want to start out by saying Jacey is currently 27 years old with two young boys. One of whom has special needs. She also, unfortunately, is currently in the process of a divorce. So she has had to start completely over. In turn, she has been forced to over work herself to try to make ends meet and stay afloat. While also caring for her 2 boys. And one of her boys attends multiple therapies throughout the week. I would also like to add her doctors have specifically advised her against working due to the strain it could put on her heart and overall health.
Jacey was born with a complex congenital heart condition called hypoplastic left heart syndrome and has lived most of her life with a fontan circulation. For those of you that don’t know, a fontan circulation is a surgical rerouting of blood flow used for children born with a single functional heart ventricle, allowing deoxygenated blood from the body to flow directly to the lungs without being pumped by the heart.
Recently, her doctors have become increasingly concerned about her heart function and overall health.
She has developed right ventricular hypertrophy, which is a form of heart failure. On a scale from 1 to 4, she is currently considered a level 3, which is serious and requires close monitoring and intervention. This level may change soon due to her most recent liver ultrasound and scheduled procedures coming up.
Her condition has progressed to the point where her care team is now discussing it being time for a heart transplant team. Her doctors have stated before that if her liver was affected from the back pressure from her Fontan, she’d have no choice but to go down that road. Jacey is now facing Fontan-associated liver disease/failure. The most recent liver ultrasound showed concerning changes, including fibrosis, congestion, and an enlarged spleen. Which means her liver is being affected by her heart condition, adding another layer of risk and complexity.
Jacey has already had 4 open heart surgeries. And now has recently been scheduled for multiple major procedures on May 14th and 15th. Including a heart catheterization, cardiac ablation, and evaluation for a possible pacemaker and pulmonary stent placement. These procedures are critical in helping her doctors better understand her heart function and try to stabilize her condition.
I truly wish I could snap my fingers and make her life comfortable while she is trying to swallow and understand all of these serious medical conditions and issues… and if you don’t know- “medically speaking”- it all happens fast. There’s not much I can say or do, and that kills me. All I want to do is try to fix or help the situation. And unfortunately no amount of kind words or acts hold a light to these serious medical concerns looming over her… but if I can at the very least help raise the funds for her to live day-to-day life without financial instability hovering over her head in the midst of all of this… trying to keep up with her doctors appointments- that are typically in OKC which is a 2 hr drive for her- without the worry of missing work… and taking care of her boys. I will do that. Please find it in your heart to consider donating. ANYTHING helps. And if you can’t donate, please share and please keep Jacey in your prayers.