Jonah Ochoa, age 2, Heart Transplant Fund

Hi, my name is Amanda Huntsman (Mandy). I am Jonah’s auntie on his dad’s side. His dad, Rey is my younger brother. We are raising funds to help alleviate some of the financial pressure on the family. These funds will be used to offset some of the expenses from Jonah’s hospital stay, his medications, and any upcoming medical needs.

Jonah’s Story written by his mom, Gina Ochoa:

“We have been on this journey from the day we found out Jonah would be born with Heterotaxy and CHD.

June 1st He was a direct admit to Rady Childrens, intubated immediately and rolled away to the surgical team. After that initial surgery we waited for him to grow so he can have his first open heart surgery. While we waited his tummy started to grow hard. He was diagnosed with Hirschsprungs Disease at 3 weeks old. Drs worried, we had a very critically ill child who needed a G.I. surgery. Could his heart handle it? He did it. He came out with a colostomy bag.

July 23rd (my birthday) he was scheduled for his 1st open heart surgery. It was a success... until 23hrs later he went into cardiac arrest. CPR was initiated and 12 minutes later he had a pulse. Weeks of recovery in the hospital and the day came when they said he was ready to be discharged. We were told he has a shunt in his heart. It is very unstable and ultimately dangerous. He isnt allowed to cry or get upset because it can clamp off and he can die. I was scared... He was fed by a tube, connected to a pump and needed so many medications to stay alive and not to mention he was going home on a high dose of narcotics we had to wean him from. He still has a bag hanging off his tummy to empty his bowels....here we go.

Things were far from normal. We lived in a covid bubble with limited contact from friends and family. We had nurses come 2x a week to check in and would goto the hospital 1x a week for a 4+hr appt with echocardiograms, ekgs, feeding therapy and finally end with Dr visit. Then came weekly physical therapy, occupational therapy and Feeding therapy visits. He had vocal paralysis from surgery, he was delayed in all gross motor skills, he couldnt even open and close his hands on his own. After 6 months of this non stop intense care Jonah went in for his next open heart surgery. The ups and downs post op were stressful. Fevers, unstable heart rates, needing to be paced, high blood pressure, etc. Rey and I were sleepless but prayerful.

Jonah was stable and going home again. Life was going to be better now, less meds, no home nurse visits, appointments bi-weekly, still lots of therapy and he was allowed to cry! He was a happy boy and determined to live. He wasn't thriving though. He struggled to gain weight and he threw up daily. I continued to pump breastmilk because it was the only thing he tolerates but he needed a high calorie diet because his body burned more energy than an average baby. The formulas that were added to his breastmilk all made him sick but we kept trying.

Jonah just had his 1st birthday and was approved by cardiology to get his ostomy reversed. I was so relieved to get rid of what Malachi called his "fart bag". That thing was so much extra work. He came out of that surgery and things were rough yet again. At that time he wasn't tolerating feeds and his heart was struggling to recover. That was our first introduction to the heart failure team. He went home on a really high dose of blood pressure medication and a close eye on him yet again.

Then he struggled to regulate his G.I. and had constant bowel movements causing raw skin. We didn't know why so went back to Surgeon. Turns out his anus was too small from the surgical site and need to be stretched. Surgeon started doing clinic visits to stretch it but it needed to be done daily so he asked me to do it. It was torture for both of us. Jonah lost his trust with me in his diaper area and I couldn't change his diaper without a fight. We ended up going to the O.R. for an aggressive stretch a couple times in addition to botox to relax his anal muscles so he could poop easily. After all this trauma we were still dealing with a rash and diet issues. Started seeing a dietitian who recommended changing his diet to a medical formula. It helped him go less often but he continued to vomit. Eventually he stopped going poop and was just constipated and vomiting. He was losing weight and his tummy was so distended. He no longer wanted to take baths because the trauma to his bottom. He stopped walking because he was so weak. It had been a year now, he was turning 2 and he is still so sick all the time.

I finally took control and found the help Jonah needed. I wanted to make his food but his nutritionist wouldn't support me so I hired a holistic nutritionist out of Canada and we made the change. It was a rough 2 weeks clearing out his gut but we stuck with it and finally, he was having regular bowel movements and gaining weight. This was the best he has been in forever. It was a short run.

Jonah started tiring out more than normal the past couple months. He was clingy and didn't want to play or walk again but this time it wasn't nutrition related. Something was different. January 12th I brought him in because his eyes were too swollen. When his cardiologist saw his labs it was clear, "Jonah is in Heart Failure". Those words don't sit right. Jonah is smart and handsome and in heart failure. 4 days later we were signing up for his evaluation; meeting with Drs from all fields, social workers, financial advisors, pharmacist, nutritionist. What is to be expected. January 19th at 12:30am he went into cardiac arrest for the second time. He quickly responded to CPR but had to be shocked with paddles to reset his racing heart. This was traumatic. For him, for Rey and for myself. Jonah was cognitive throughout the process. Shortly after anesthesiologist put him to sleep as he screamed "I don't want to" and 2 days later he woke up from sedation.

On January 22nd Jonah was officially listed on the waiting list for a heart Transplant. Since then he has been tired and vomiting. Sleeping most of the time and very weak. We are hoping and praying he can feel good again while we are here waiting for a donor heart. This is not the full story nor is this the end of Jonah’s story but this is where we are today.

We continue to be grateful for all the support and love from everyone who has followed this story from the beginning and the ones who are following it today.”

Thank you from the bottom of our hearts for your continued support whether in the form of a donation, prayers, etc. Every act of kindness is felt and keeps us encouraged. We love all of you so much!

If you feel led please share our story with family and with friends.

Please continue to pray for a heart to become available ASAP. Jonah has been on the transplant list for 25 days now. We will continue to post updates here and on our social media pages.

God bless each and every one of you! Thank you for loving on our family during this time!!!