Gideon the Brave’s Heart Surgery

Story

Gideon the Brave is sweet and fun-loving 4 year old boy. He loves his sisters, parents, spider-man, fire trucks, and paw patrol. He has fought through 3 major open heart surgeries as well as countless procedures and long hospital stays. His most recent surgery was pulmonary reconstruction which lasted 23 hours in April 2021. Gideon is very complex and there aren't other kids like him to compare to, so while we are given estimates on next surgery dates it depends on his heart and unfortunately things can change. We expected Gideon to not need another surgery for maybe 7+ more years and very unfortunately that number has been cut short yet again. Gideon will be headed back to Stanford in California for his next surgery including a conduit replacement and pulmonary reconstruction very soon. His surgery date has been set for June 19, 2024. 

Many people have followed along with Gideon's journey from the beginning and we are so grateful for all of the support. Everyday that Gideon is bright eyed and ready to tackle his next adventure is a blessing. The past 4 years we have tried to get our bearings but with multiple surgeries and illnesses we've devoted so much time and resources to Gideon's health. It is so hard for Jordan and I to ask for help, let alone multiple times. Yet here we are again-asking for your support to help get our family to California again to save our boy. Please pray for Gideon's body-that both mentally and physically he can sustain another difficult surgery, recovery, and hospital stay.

How to Support:

Shop + Give: 40% of each purchase of the "Gidon The Brave" CauseTee or any CAUSETEAM Merch is donated back.

Crowdfunding: 100% of all cash donations are gifted back (minus standard credit card fees).

The collective money raised will go towards our expected 6-8 weeks away from home including airfair, a rental vehicle, a place to stay and food. As you know the Palo Alto area is very expensive and being away from home brings many expenses.

 

Here's a brief overview of Gideon's incredible story:

Jordan and I (Michelle) were so excited to welcome a boy to our family after 3 girls. Gideon Abel was born on his sister's birthday in November 2019. His birth was perfect but over that first day we realized something appeared to be wrong. At his 24 hour check his oxygen was too low so we headed with our new baby boy to the hospital to get things checked out. Over the next 2 weeks he was at INOVA Fairfax hospital where we'd begin to learn about the complexity and seriousness of his heart and health. Gideon was diagnosed with Tetralogy of Fallot with pulmonary atresia and MAPCAS as well as DiGeorge Syndrome/22q. What that means is that Gideon had a hole between the top and bottom chambers of his heart, thickening of the wall in his right ventricle, a nearly closed pulmonary artery as well as the MAPCAS, which are extra arteries his body created to try and make up for the lack of blood flow to his lungs. We often focus on the MAPCAS because that is what makes his heart so severe and rare. No two MAPCAS patients are alike, these arteries begin in different places, supply blood to different areas of the lungs and are often unreliable in nature. 

On Thanksgiving 2019 we transferred to Lucille Packard Children's Hospital at Stanford in California. Dr. Frank Hanley has pioneered a surgery to help save these MAPCAS babies and he was Gideon's greatest chance. Gideon was extremely unstable during this time, he was intubated and on many medications. We expected to be in California for 2 weeks the. Return home for Gideon to grow more. Gideon's first surgery was Dember 4th, 2019. This was to open a window and allow more blood flow to his lungs. Seeing our baby's perfect body then seeing him go away and come back with a fresh incision down his chest is harder than I could begin to express. The surgery took several hours and once they were done we were told it had gone well and as soon as he was cleaned up and back in his room we could come back to see him. Jordan and I were in Gideon's room for just a few moments before he went into cardiac arrest. He was placed on ECMO for a week. He eventually did come off of ECMO, Gideon was eventually able to be extuabted during this time but his heart still appeared to be very unstable and he was not growing. Our two week timeline comminuted to be lengthened. After not being able to get Gideon's heart, lungs, and blood flow in a stable place we learned he'd need his next and more major surgery sooner than expected. We weren't able to go home but instead spent the next 6 weeks in the hospital trying to get Gideon to grow and waiting for what we thought to be the most major surgery he'd need. Gideon's second heart surgery took place in January of 2020. This surgery included his unifocalization which corrected the defects of his TOF, it added an artificial conduit to supply blood, and combined his MAPCAS or coiled off extras to give him adequate blood flow to his lungs and throughout his body. Recovery was difficult but continued forward until we finally were discharged and able to return home in March of 2020. We truly thought we were past the hardest part of the story and that we could begin to breathe again with our family home, healing, and together.

The year following our return home was nothing like we could have expected. Not only did we have to fight for Gideon's medical needs to be met as new medical parents due to widespread closures but we also saw very slow growth from Gideon. He struggled in just about every area from growing, to his health, to meeting milestones. We assumed it was par for the course but it was far from easy. Gideon had a heart cathaterization 1 year following surgery. Here we learned that Gideon had now developed pulmonary hypertension and would need to return to Stanford for an even more complicated and serious surgery for Pulmonary Reconstruction. Gideon's right ventricle was waorking way too hard and his pulmonary arteries that had been so tiny from lack of blood flow before birth were still not growing even with better blood supply.

April 2021 Gideon underwent a 23 hours surgery. Dr. Hanley reconstructed over 10 pulmonary branches on both lungs as well as gave Gideon a new conduit. Near 3am we got a call that the surgery was finally complete and it had gone well. The surgical team was getting Gideon's blood pressure under control but he's be back to his room shortly. Jordan had to head back to our Airbnb to be with the kids and I stayed at the hospital. I remember shivering on a hospital couch until I finally passed out some hours later. A member of the medical team woke we up to tell me Gideon nearly arrested again and was placed back on ECMO. The recovery following was full of some of our lowest lows. Gideon had many rare complications and pneumonia in each lung. His team of doctors were stumped on more than one occasion and had sat us down to discuss the possibility of Gideon not surviving. Through many hard won battles and miracles Gideon was able to pull through. After about 8 weeks he was able to be discharged.

The time that has followed has included more growth for our brave fighter. He's grown more, met more milestones, tried new things, spent time with his now 4 sisters. It's also included many months on oxygen, more than 1 ICU stay in Virginia, a cath in Ca, a new stent for his conduit, sicknesses that have taken long periods to recover from, and many doctors visits. Gideon's journey has included high mountain tops like standing and taking a step for the first time, becoming a big brother, eating pizza and popcorn and many low low valleys like hospital stays, time away from his family, not having enough stamina to move, and throwing up often.

Just this past November, Gideon had a MRI to check on his heart since it had been a little while and he had also come off of his hypertension meds. Given that Gideon has been overall doing so well we expected more positive news. We didn't get to review the results with his home cardiologist until January. We learned that his right ventricle is severely struggling once again, and that there are many areas of leakiness through his heart. He now needs another pulmonary reconstruction and a bigger conduit. We are absolutely crushed at this news. To think of another surgery and all that brings again so soon is nearly too much to bear.

Gideon Abel means warrior breathe. We know God has a unique story and journey for Gideon's life. He has made us better people and a stronger family. I can't wait to see all the amazing ways he touches the lives of everyone around him.

We are expecting to need to be in California about 6-8 weeks. This reconstruction should hopefully not be as major as the first one but every recover brings it's challenged and Gideon will lead the way.

We are doing this fundraiser to help raise funds to cover costs while we are away and would greatly appreciate you considering to support our family and Gideon the brave once again.