Supporting the Koehler Family
Goal:
USD $100,000
Raised:
USD $19,871
Campaign funds will be received by Clay Koehler
Supporting the Koehler Family
Baby George has been a fighter since his first breath on March 5, 2024, battling one of the rarest cases of Congenital Heart Disease ever diagnosed. He has spent over 1/3 of his life so far either hospitalized or at doctor’s appointments & various medical tests. With all George has been through he has continued to be the happiest boy! His smile lights up the room & brings joy to anyone he is around especially to his Mom (Meghan), Dad (Clay), & Big Brother (James).
His family has done everything they can to give him the best possible care. Meghan took leave from work as a Nurse Practitioner & has been George’s full-time caregiver since he was born. The loss of Meghan’s income & Clay taking significant time away from work, along with medical expenses, travel expenses for medical care, & increased cost of living have taken a toll on the family’s finances. Clay & Meghan have always been givers to their community and look for ways to help others, now they are in need of our support. Please read George’s story and help in any way you can.
Thank you!
George’s Story
At the 20-week ultrasound the family got the first indication that George had something wrong with his heart. Initially it appeared he had a relatively common VSD, which is a hole in the wall between the right & left ventricles of his heart, & the hope was that the VSD would close on its own without surgical intervention. Unfortunately, George’s disease proved to be much more complex than originally thought & at each subsequent ultrasound more defects were discovered.
George was born at Riley Children's Hospital in Indianapolis and immediately taken for an echo which revealed the full extent of his CHD & it was devastating to everyone. He has a Ventricular Septal Defect (VSD), Double Outlet Right Ventricle (DORV) with Transposition of The Great Arteries (TGA) along with a single coronary artery, straddling mitral valve, & pulmonary stenosis. Amazingly, this list doesn’t even have all George’s defects!
At just a couple of days old he underwent his first open heart surgery to place a shunt that allowed his blood to mix and keep him alive & growing so his medical team could work on developing a plan. His blood oxygen even after this surgery was targeted to be 75-85% so everyone knew that he was going to need corrective surgery as soon as possible, but he needed to grow & get stronger.
George was finally able to be held for the first time as Purdue Basketball was making their amazing run to the Final Four. He watched every game of the tournament being held by his Dad rooting for their beloved Boilers! The excitement of March Madness must have given George a boost because he was finally able to go home on April 10th after 37 days in the Cardiac Unit at Riley. Since then, he has been in and out of the hospital multiple times spending a total of 69 days hospitalized in 2024.
Fast forward to November 2024, George’s condition started to deteriorate & his case was sent to some of the top pediatric cardiothoracic surgeons in the world. Opinions varied on exactly what should be done, but everyone agreed that he needed an intervention sooner rather than later.
On December 12th Meghan reached out to Dr. Victor Morell’s office at UPMC Children’s Hospital of Pittsburgh. Dr. Morell is regarded as one of the top surgeons in the world for the Nikaidoh & Rastelli, two extremely complex corrective surgeries that it appeared may be a fit for George. George was scheduled for an MRI on the morning of the 13th at Riley & Dr. Morell agreed to review his case that afternoon. By 4:00pm, Meghan got a call from Pittsburgh that his case had been accepted & there was an opening in the OR on Tuesday, December 17th, which happened to be Clay’s birthday. What an amazing birthday present to have George get the surgery he needed so badly.
On Saturday, December 14th, Geroge, James, Meghan, Clay & their puppies celebrated Christmas together as a family & spent the day being thankful their prayers were answered that George was going to get his surgery.
The surgery on December 17th ended up being a Rastelli Procedure. A Gortex conduit was implanted in George’s right ventricle which crosses over the outside of his heart and is sewn to his pulmonary artery. The VSD was closed as part of the procedure. On December 18th, about 24 hours after his surgery, George’s body proved to be too weak to heal on its own and the decision was made to place him on ECMO life support. It was an incredibly scary time for everyone as ECMO essentially acts as the lungs of a patient, many who go on ECMO don’t ever come off. True to form, George beat the odds & successfully came off the life support after just a few days! He underwent another surgical procedure on December 30th to have a stent placed in his left pulmonary artery.
George’s story is far from over and what is described here is only a portion of what this Heart Warrior & his family have been through. With the Rastelli it will be necessary for him to have additional open-heart surgeries as he grows to replace the conduit since it will not grow with him. In addition, he will have to have a mitral valve replacement in the next 12-24 months, which will likely mean a pacemaker as well. He will also need stent replacement as he grows to maintain blood flow to his left lung. One thing is for sure, with the amazing community of people keeping George & his family in their thoughts & prayers, this smiling young man will beat CHD & grow up to live a long healthy life.
Recent Donations
Stay strong George & fam!
Praying for baby George and your family.
Praying for this kiddo. Although I don’t know him, his great Aunt keeps me updated three times a week.
Our son, Cameron is 6 years old and brought us his own money. He’s praying for great news!
Keep fighting, George!
Praying for George and his family!
Lifting up George and the Koehler family in our prayers.
Updates
George is Back Home
April 15th, 2025
George returned home yesterday after a few weeks stay in Riley! He was happy to be reunited with his brother and family!
Update on George!
April 7th, 2025
On Saturday the 29th, we took George to the Emergency Room at Riley because he was suffering from severe GI bleeding & weakness. He’s been at the hospital for a week now & we are seeing him start to become his normal self again.
George keeps making slow and steady progress 🙌 he should be up to goal feeds of breastmilk within the next few days, then they will trial fortification again since he is still losing weight. His heart remains stable though ❤️💙 Praying his bowels tolerate fortification and we can get home soon!
Thank you for all of the love and support 🙏 We could not survive without it!
Happy One Week HOME Baby George ❤️💙
March 15th, 2025
1 year ago today was supposed to be his induction date, and by that time he had already been through his first open heart surgery. What a true heart warrior!
We feel beyond blessed to be back home together again. There have been, and remain, some struggles, in particular feeding and fluid balance issues. George seems way less bothered with the distractions and comfort of home though.
Monday is a big with cardiology follow-up, repeat ECHO, ECG, and Chet’s x-ray, and possibly labs. We will live ECHO to ECHO regarding his mitral valve so we are praying for a good report.
Thank you for all of the love and support! We could not do it without 🙏❤️💙
Happy 52 Weeks Baby George ❤️💙
March 5th, 2025
Shhhh…..We snuck out side for some fresh air 🙌
A birthday discharge will not be in the cards but we will still celebrate Cinco De Jorge 😎
In true George fashion he has decided to have some heart rate and yet again, oxygen issues….he did successfully have his Broviac removed today though! One step forward, two steps back seems to be the name of the game.
Please continue to send positive vibes and prayers his way 🙏 Thank you!
Dream Big Baby George 💙❤️
February 20th, 2025
He is making some big strides this week 🙌 The Milrinone has been off for over 48 hours and his diuretics have been decreased by more than half. George is taking a little over half of his nutrition by mouth or gtube 👍
As long has he keeps the course there is a possibility George may be either discharged to the Ronald McDonald house for close outpatient follow-up or HOME by his birthday 🙏
Please keep sending those positive vibes and prayers his way! Thank you!
Happy 50 weeks! The big 5-0 Baby George 💙❤️
February 18th, 2025
George Strong!
February 10th, 2025
George has been able to come back off oxygen 👍 but his kidney function is worsening again. Finding the right fluid and diuretic balance for him remains tricky but small changes are the name of the game! Despite some minor setbacks and continued GI issues George continues to surprise us! He drank from a straw cup today 🙌 He has also enjoyed rolling all around on the floor mat, hes become quite the George-nado 🌪️ He truly is amazing 🥰
Tomorrow he will have a repeat ECHO, ECG, and chest x-ray. He had a normal abdominal ultrasound yesterday. Please continue to keep sending positive vibes and prayers his way. Thank you for continuing to share his story and for all of the love and support that has got him this far 🙏❤️💙 #georgestrong
1 in 100 suffer from congenital heart disease (CHD) and 1 in 10,000 suffer from double outlet right ventricle (DORV), with 25% also having transposition of the great arteries (TGA) like George 💙❤️ He was gifted this fish by a fellow heart warrior that we met in cardiac intensive care who was born with an Ebstein anomaly, which makes up less than 1% of all congenital heart defects! #CHDAwarenessWeek
24 Hours without Oxygen, Go George!
February 8th, 2025
George was able to be off oxygen for over 24 hours 🙌 Way to go buddy!
Unfortunately, he has had to go back on just a little bit at 0.05L this morning due to some increase in fluid retention. His kidney function also worsened slightly, while having more feeding intolerance issues. The team is hoping to tweak a few medications and feeding plan to avoid having to increase the Milrinone (his cardiac drip that helps with overall cardiac function, relaxation, and perfusion).
The past few days have been really good, so we are hoping today is just a little setback and he’ll be back to good tomorrow 🙏 We continue to be overwhelmed with gratitude for all of the love and support. It helps when we are having some setbacks to know with our tribe, we are strong 💪
Thank you so so much 🙌 Please continue to send positive vibes and prayers George’s way 💙❤️
Ps. Check out his toothers 🦷 We came here with 4 teeth and now he has 8!!
Happy 11 Months Baby George 💙❤️
February 5th, 2025
We are beyond appreciative and have the deepest gratitude for all of the love and support our family has received over the past 11 months, and especially the past 24 hours! THANK you 🙏
It has been over 50 days since George’s Rastelli surgery! Since then has also endured 3 cardiac catheterizations, a blood clot in the right leg, tissue death to his spleen, bowel intussusception, removal of his j-tube, pulmonary artery stent placement, ECMO, delirium, and all that accompanies extended hospitalizations.
Through it all he has remained our sweet Georgie, with a little Jorge (what we call him when he’s being spicy 🌶️) sprinkled in every now and then. We are in complete awe of George and are blessed to be George and James’ parents 🙌
Today George was transferred back to the stepdown service and is currently taking his first full nap on room air 👏 He’s up to 8ml/hr on his feeds and is finally above his admission weight for the right reasons (not just excess fluid), weighing in at 10.4kg 💪 #georgestrong ❤️💙 #babyboilermaker 🖤💛
Happy 48 weeks, Baby George 💙❤️!
February 4th, 2025
We celebrated with essentially normal abdominal CT results 🙌. The CT only showed a small area of the spleen that suffered from hypoxia (low to no oxygen levels); we are unsure when this may have occurred, but the rest of the spleen is functioning well, and most importantly, no other areas of concern for vascular defects or intussusception 🙏.
George still needs just a whiff of oxygen, 0.02-0.05L, mostly when asleep, and he is up to 6ml/hr of feeds via the gtube 👍. The team would like feeds to be optimized before tackling his cardiac drip titration, so we will likely be here for a few more weeks.
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