I am a mom, pushing my pride aside, asking for help at one of the most difficult times of my life. My 12 year old son, Boone, will face pretty extensive open heart surgery. Boone and I will have to travel 4.5 hours from home for this operation. We will travel on Monday. Boone will have a Cardiac Cath on Tuesday followed by Open Heart Surgery on Wednesday. This surgery requires us to travel far from home, accruing expenses such as gas, food, basic necessities and possible lodging if the Ronald McDonald house is unavailable.

This will be Boone’s 3rd open heart surgery. He is more aware this time. He is more fearful. As a mom, I try to stay strong for him and try to reassure him, but this uncertainty is hard. He is getting older and has lots of anxiety and questions. My plan is to be by his side before and after his surgery. I am humbly asking for help so I don’t have to choose being with Boone and worrying about how we will survive financially. Any donation, any share, any prayer means the world to us. Thank you from the bottom of my heart and from Boone’s repaired heart.

Back history- Boone has Heterotaxy Syndrome, Biliary atresia( he may need a liver transplant in the near future) Congenital Heart Defect( single atrium, PAPVR) Hypogammaglobulinemia, Nephrocalcianosis, brochomalcia, situs inverus totalis, Abernathy anomaly are just some of his diagnosis’. But looking at him you wouldn’t know anything was wrong with him. He’s quite amazing!

The bravest little boy I know just went back for his open heart surgery today, a subAortic Membrane resection. This will take 6-8 hours. I’m handing my child over to basically strangers, I’ve only met them once or twice before, trusting them with his tiny heart, this feels unbearable.

My heart aches. Every instinct in me is screaming to protect him, to trade places with him, to hold him and never let go. I am scared in a way I’ve never known and yet it’s familiar.

And still—somehow—I am holding onto faith, to prayers, and to the quiet belief that this sweet, brave boy is stronger than this moment. Please keep my Boone in your prayers, he sure could use them!

It’s been a week since his surgery, he continues to fight different battles each day. Boone’s heart rate dipped down to 27 last night while sleeping, normal for a child is 58-90. BP was 70/31. He has increased abdominal swelling. Electrolytes are still abnormal. Fluid on Right Lung has greatly increased since yesterday, looks worse than it has in the past. He’s lost around 6lbs. Plan for the day, more Lasix, abdominal ultrasound, pushing food and protein drinks, replacing electrolytes via IV. Consult more Doctors to check to conductivity of his heart, ultrasound. Ambulate and sleep.

Three weeks since his surgery- Boone still tires easily, his appetite is only about 50%. Incisions are healing. We found out he has a sprained ankle, which occurred during surgery. His aorta was adhered to his sternum, so he bled badly. They did any emergency femoral bypass to divert blood flow. The position of his leg for 5-6 hours caused the sprain.

Boone will attempt school half days next week. No physical activity, no bookbag or lifting more than 5lbs.