March 2024 we found out we were expecting, something we didn’t think was possible without fertility assistance. We were overjoyed at this news. A week later, we discovered we were 22 weeks along and needed further testing because his heart didn’t look right on the ultrasound. The very next day, we discovered Griffin would be born with two congenital heart defects.
The last trimester of my pregnancy, I had multiple appointments to monitor his heart and ensure a safe delivery. At the end, I was on bed rest in the hospital because he wanted to come sooner than expected.
When he was born, he immediately had an echocardiogram to confirm what all the prenatal echocardiograms showed. He was officially diagnosed with trisomy 21, atrioventricular septal defect, and a hypoplastic right ventricle, meaning he had a large hole and single ventricular heart.
He was discharged from the NICU within 6 days, and we knew how to monitor his oxygen saturation levels and what to watch out for.
Shortly after going home, he needed surgery to place a band around his pulmonary artery to help limit the blood flow to his lungs.
Though he has had multiple hospitalizations due to illnesses and low oxygen saturation levels, Griffin has remained a fighter, and as a family, we have been by his side.
In November, Griffin had a heart catheterization in preparation for his upcoming Glenn Procedure, the second surgery to help his hypoplastic right ventricle. It showed good pressures, and surgery was scheduled for January.
On December 29, 2024, Griffin was admitted to the hospital with RSV, Rhinovirus, and Strep throat. At that time, we knew surgery would be postponed, and he would remain in the hospital until then.
Griffin started to get better, and surgery was discussed, but the team wanted an updated heart catheterization to ensure he was still a candidate for the Glenn Procedure. Unfortunately, his pressure was too high, showing pulmonary hypertension, and the Glenn Procedure could not be done. His best chance was for his surgeon to remove the pulmonary artery band. We scheduled that surgery because we knew that would give him the best chance.
Griffin took a turn for the worse and needed emergency surgery to remove the pulmonary artery band. The entire team was unsure if he would make it through the procedure or recovery.
Griffin is a fighter! He made it through the surgery and recovery and has become stronger and stronger each day.
Throughout his recovery, he has battled a variety of infections and a leg clot; however, he continues to fight.
Since he has done so well, his cardiac team wanted to check his pressure again to see if he could have the Glenn Procedure, so back to the heart catheterization lab he went.
His cardiac team was undecided and not in unison about the best next steps for him after the results of his heart catheterization. They consulted All Children’s Hospital in Tampa for recommendations. His cardiac team presented us with a plan that may or may not work: fix his leaking valve and possibly complete the Glenn Procedure, not knowing if it would work or need to be reversed.
As a family, we opted for surgery with the hope it would work but requested a second opinion. We knew Boston Children’s Hospital has pioneered surgeries for kids with Griffin’s condition, and maybe they had a different suggestion.
Boston Children’s Hospital cardiac team and Complex Biventricular Repair team proposed fixing his valve and completing a one and a half ventricular repair, a surgery they pioneered.
As parents, we immediately made the decision to move Griffin to Boston so he can get the surgery he needs.
As of right now, we do not know if they will be able to complete both repairs at once or if Griffin will need to have two stays in Boston.
Our plan is to have Nick take a leave from work to stay with Griffin in Boston throughout the duration of his recovery. I will stay in Florida with the girls and travel to Boston for his surgery and other times as needed.
First and foremost, we ask for prayers for Griffin and our family as we go through this challenging time. We are so grateful and thankful for all of the support we have received over the last year as we know we couldn’t have done it without that support.
We also ask for any monetary assistance you would feel compelled to provide. Any donations would go directly to Griffin’s medical expenses, our travel expenses to and from Boston, and any other expenses accumulated while in Boston.
We do not know how long Griffin will be there or how long Nick will be out of work, so any support would be helpful.
We appreciate any prayers & help you provide.
Thank you,
The Bordner Family
April 10, 2025 Update:
Griffin safely made it to Boston on March 26 at 4:00am. His medical flight was delayed because they had to get a new plane! He did amazing on the flight.
They gave him a day to rest, recover and get to know him before they started running tests. On Friday, March 28, 2025, he had a CT Scan, MRI, and heart catheterization to get the most updated information about his heart so they could have the best plan moving forward.
After reviewing all of the data and creating a 3D model of his heart, they came up with a plan: A Complex Biventricular Repair along with fixing a few valves. This would allow his single ventricle heart to function as a two ventricle heart and allowing him to eventually have normal oxygen saturation levels.
Thursday, April 3, 2025 Griffin had his complex heart surgery lasting over 10 hours. He did amazing through the procedure!
Friday, April 4, 2025 he needed to have a heart catheterization to ensure his arteries weren’t blocked as his heart wasn’t squeezing very well. Luckily, he was fine and didn’t need to have an additional surgery. The team believes his recovery will be long and he needs time to allow his heart to grow stronger and his body learn how to use his whole heart for circulation.
The team had left his chest open to allow for the swelling to decrease, reduce fluids in his body and in the event they needed to go back in and fix anything. They anticipated closing it on Monday, April, 7, 2025. Unfortunately, he has had a bumpy road and this has not been possible. His lung has collapsed twice, he’s taken longer than anticipated to reduce the swelling & fluids, and has required more respiratory support than they’d like to see at this point. They have discovered that his right side of his heart is showing positive signs that it is getting stronger and Griffin just needs more time to rest and recover before closing his chest. The team anticipates closing his chest on Friday, April 11, 2025.
April 18th Update:
Sunday, April 13, 2025 Griffin was put on the VV-ECMO machine. This is a life support therapy used to provide respiratory support in patients with severe respiratory failure. It acts as a mechanical lung, bypassing the patient's lungs and taking over the function of oxygenating the blood and removing carbon dioxide. This allows the patient's lungs to rest and recover, often as a bridge to full recovery. Since being on this, his lungs have been improving.
Friday, April 18, 2025 they were able to fully close his chest! He remains on the VV-ECMO machine while he recovers!
April 30: Griffin was successfully taken off the ECMO circuit. The cannulas
remain attached as an emergency backup for 24- 48 hours and they ran a blood thinner through that port to keep the access point open. This would allow an instantaneous move back on ECMO if he shows the need in the next 24-48 hours, which they did not expecting him to need. He has an infection in his throat, he is currently being treated for a Pseudomonas infection with two antibiotics. They discovered earlier this week that his Pseudomonas was resistant to his previous antibiotic. They are awaiting some additional test results from the lab in hopes to move to a singular antibiotic treatment. Now that they know the previous antibiotic wasn’t effective, they believe his blood pressure swings are most likely due to his infection causing his blood vessels to dilate, dropping his blood pressure.
May 4: Overnight Griffin experienced some heart rate spikes and blood pressure swings. To rule out any neurological challenges they completed another head ultrasound resulting in no changes from his previous one. In addition he is currently undergoing an EEG to monitor/measure his brain’s electrical activity. Nothing resulted from the EEG.
May 5: The team removed the cannula fromECMO
May 5 : Griffin’s spiked a fever up to 106 degrees. They are placing a cooling blanket underneath him to assist with bringing his temperature down. After multiple tests, they couldn’t find the culprit to to rapid increase in temperature. He made it successfully through the night and his tempature came back down to normal. After tests, no sign of infection.
May 11: The team discontinued nitric oxide & lowered respiratory support. He is working hard without the extra support but doing amazing!!!
May 24: Griffin’s breathing tube was removed and he started on BiPAP. This was a HUGE day for Griffin!!!
May 26: Griffin is doing so well, they switched him fromBiPap to CPAP support!
May 30: After many months advocating, Griffin finally received a helmet for helmet therapy for his plagiocephily!!! The team is also having Griffin do trials of the nasal cannula to see if he is ready to remove the CPAP mask!
June 5: The temporary pacemaker Griffin had in place since his surgery was removed. He also started feeding therapy and has some banana puree!!! He loved it!
June 7: Griffin is officially off of all drip pain medication!!! He is also officially off of the CPAP mask and only he is only needing support through the nasal cannula!!!
June 8: Griffin’s RA line is out and he only has one pump on the pole for medications! This morning during rounds they talked about switching his anticoagulant medication to something that would go through his NG tube rather than a drip! He is making big moves on his road to recovery!!!
June 9: Griffin is officially out of the ICU!!! This unit will be his “home” until his next surgery and possibly until he comes home. He also officially has no more poles (no drip medications or flushes)!!! He is currently working on weaning clonodine, a medication he was put on to help with pain during the weaning of the main pain medications.
June 11: Griffin has had a great few days however, he has had a minor setback. During a routine X-ray of his lungs, they discovered a fracture in his left humerus and right humerus bones. They did additional X-rays to confirm they are fractured. Out of precaution, they also looked at his lower extremities and there are no other fractures present. They believe this was caused because of poor bone health from the length of his hospital stay & medications he is on. They will continue to monitor it and provide additional supplements if needed. His team has decided to make some changes to his feeding routine. Currently, he is on 38ml an hour continuously over a 24 hours. They are increasing that to 48ml per hour. Over the next few days, they will be making adjustments to change the continuous feeds to bolus feeds with the goal being 6 feedings a day, which is typical for his age!!! The feeding therapist also recommended increasing the amount of times we “taste” baby purées to twice a day to give him extra practice with his oral motor skills. Since Griffin was born, we’ve had to monitor his oxygen saturation levels. Since he has been hospitalized, he’s been on continuous monitoring. They are switching that to monitoring him every 4 hours!!! Since surgery, his oxygen levels have been in the mid 90’s, something we have never seen!!!
June 16: Griffin has done so well with his samples, that the team did a swallow study to ensure he is on the right track. He did amazing. We are safely able to feed him a little more and give drinks of water too!!!
June 22: Griffin is officially off of the pain medication Clonidine!!! He is only on 1 pain medication, Gabapentin, to treat his nerve pain from his Ischemic skin.
A lot of people have asked why Griffin is still in Boston. The short answer is he is preparing for another surgery and we need to ensure that as he has this surgery and recovers, if anything g were to arise with his heart function, his heart surgeon here.
We have been working closely with two orthopedic surgeons, one for his upper extremities and one for his lower extremities to determine amputation. We know now that he will have a double amputation of his lower extremities and the loss of fingers of his upper extremities. Right now, from the looks of things, they will amputate his left foot at the ankle and the right leg below the knee. They may need to amputate above the knee if there is not enough healthy tissue to help it heal. In addition to his heart condition, Griffin developed pulmonary hypertension. His lungs were very sick. In order to successfully recover from surgery, he had to go on the VV-ECMO machine. This took over for his lungs allowing them to heal. While on ECMO, the blood doesn’t flow through the body correctly causing poor blood profusion to the limbs. They thought Griffin was good to come off of it after a week but ultimately he wasn’t ready. He ended up being on it 16 days. The additional time caused significant tissue damage because of the poor blood flow. He’s had parts of the ischemic skin show signs of healing in his arms. They are waiting as long as they can to see what happens with the healing of his skin and what will be viable. As of right now, the orthopedic surgeons are closely monitoring him. They believe the longer we wait the better. We will readdress when surgery will be at the beginning of July.
June 23: Grade fun turns one!!! It has been a long, hard year but Griffin has proven he is a fighter and one of the strongest kids I know!
His birthday was filled with lots of love from people everywhere. Thank you for making sure he knew how special he is!!!
June 23: Griffin didn’t seem like himself in the afternoon which usually means something is wrong. His right leg was warm to the touch and inflamed. We were worried about infection under his ischemic skin. The orthopedic team was paged. The next day, the team determined it was time for amputation for fear of we waited any longer, it would become infected.
June 25: Griffin underwent his amputation surgery. He had his right leg amputated through the knee and his right ankle amputated. At this time, the team determined not to do anything with his fingers and to let the body heal on its own. Griffin did amazing during surgery and was able to have the breathing tube removed in the operating room. He was readmitted to the ICU but looked really good. You would never know he had major surgery!
June 27: He had a significant amount of oxygen desaturations. They increased his oxygen support to high flow at 100% and gave him blood platelets. He continued to desaturate so they added the nitric oxide back on because they believe he is having a pulmonary hypertension episode. They repeated an X-ray and EKG and it was unchanged. They repeated his echocardiogram to get a look at his heart function and it looked unchanged.
June 29: Griffin is just full of surprises!!!
Yesterday morning he spiked a fever of 101 so they started him on a broad spectrum antibiotics and sent out cultures to see if he has an infection. He has not had a fever since then.
Yesterday they were able to get the rate of his oxygen down to 10 and the percentage to 50%. Mid afternoon, they had to go back up to 60% because he was having desaturations. Over night, he was very fussy and around 5:00am, he had desaturations on the 50’s so they turned his oxygen back up to 100% and his rate back up to 18. Since then, they have been able to come down on his rate to 12 and his percentage to 80%. Hopefully they will be able to continue to come down on his oxygen. They believe the decrease was a pulmonary hypertension episode. We should know more in the next few days. They have not touched his nitric oxide.
July 1: Griffin officially came off of high flow oxygen & nitric oxide!
July 2: The team removed his wound vac to check the healing of his amputation. They looked great and he was ready for Shriner socks.
July 4: Griffin is officially out of the ICU!!!
July 23: Griffin had his GTube surgery. He did such an amazing job he didn’t have to go back to the ICU!!! He is getting stronger and stronger each day!!!
August 1: After 215 days (128 days in Boston & 87 in Orlando) Griffin has been discharged from the hospital!!! This is a HUGE milestone! Griffin has checked in to his new home, Spaulding Rehabilitation Hospital. He will remain their for about a month! As parents, we are so excited for his next steps in rehab and getting our little guy home!
August 9 at 1:00am, I received a phone call from Spaulding, the rehabilitation hospital, informing me Griffin spiked a fever of 102. They had previously shared that his right leg had been a little more red and tender to the touch. Out of abundance of caution, they were sending Griffin to the ER at Boston Children’s Hospital. He arrived just after 2:00am and by 3:00am they were admitting him back to the ACCU for further care. They immediately started him on a broad spectrum antibiotic. Thanks to my amazing cousin, I was able to FaceTime Griffin, at 3:00am, to see that he was okay. She got up in the middle of the night to be by his side and hasn’t left yet! Around 7:00am, I received a call from one of the attending to get basic background information and to ensure I knew what was going on, since I was not there. Then around 8:00am, I received another call from the rehabilitation doctor at Children’s sharing she was sad to hear about Griffin being transferred back and explained what the process would look like moving forward. While at Children’s, Griffin has an amazing doctor in his fellowship program that has been on his case, by choice, since the beginning. He was notified of Griffin’s return, and made it a point to stop and see him and call to ensure I knew what was going on and to see if I had any questions. It is amazing to know he went out of his way for Griffin!! His surgeon stopped by to see him this morning too just to take a look at him as well. Griffin’s orthotist was supposed to measure his head for his helmet today and check on his shrinker socks, on her day off. I informed her that he had been transferred and she immediately offered to go be with him if my cousin wasn’t there.
August 10: At this time, they believe he has an infection in his right leg wound but are waiting on cultures to confirm. They are debating what course to take to help his wound heal and will continue to gather information to make the most informed decision
August 15: Griffin was transferred back to Spaulding Rehabilitation Hospital!!!!!
August 16:one day after his return, Griffin spike a fever of 102. Out of abundance of caution he was transferred back to Boston Children’s Hospital. I contacted the amazing fellow who has been on his case since the beginning and he met him in the ER, on his day off (I would have never contacted him if I would have known he was off)!!! They admitted Griffin. They ran labs and took cultures but never found a source of the fever.
August 21: HUGE milestone for Griffin today…
After approximately 223 days, his PICC line was removed!!!!! With this gone, it’s one less infection risk. We are waiting on bed availability & insurance approval to transfer back to the Rehabilitation hospital.
August 22: Third time’s a charm…
Griffin was transferred back to Spaulding Rehabilitation Hospital today! We will always be thankful to the amazing team at Boston Children’s Hospital for the amazing care & love Griffin (and our family)recieved during his time there. We are praying he will be able to stay there this time and get all the therapy he needs!
September 7: After 165 days in Boston, Griffin flew home to Florida!!!! We are so excited to have our little guy back in our home state! Hopefully his hospitalization here is short!
September 15: Griffin’s Home❤️
After 260 days, 4 surgeries and 16 days on VV-ECHMO, Griffin has come home!!! The amazing surgeons, doctors, nurses, occupational therapist, physical therapist, speech and language pathologists, feeding therapist, music therapist, child life specialist, social workers, family, and friends has helped him so much and words will never be enough to thank everyone for their support and dedication to Griffin!!! Tonight we enjoyed our little guy.
October 1: Griffin faced his first illness since being home, a stomach virus. A quick trip to the doctor for a checkup to make sure he’s okay & a few days of rest was all he needed. The best part, he didn’t get readmitted to the hospital.
October 12: A quick trip to the ER. Griffin’s left pointer finger auto amputated and bled a lot. It eventually stopped and I didn’t need to take him to the hospital but the next day, his s right pointer finger auto amputated and wouldn’t stop bleeding. We took him to the ER to get it to stop. We are so happy he is healing so well but we knew bumps in the road would occurred just like this. We are hoping his two newly amputated fingers heal and he doesn’t get an infection. He has two more left to amputate and we hope they come off smoothly.
October 16: Griffin was admitted to the hospital for testing positive for Rhinovirus and he needed more oxygen support than we could provide at home. Luckily, he was able to come home October 18, his shortest hospital stay!!!!
November 16: Griffin was admitted to the hospital again. He tested positive for Rhinovirus & a UTI. Fortunately, the rhinovirus isn’t impacting his oxygen levels as he’s still at his baseline. However, We found out he tested positive for E. Coli from his UTI. Today the cultures came back positive in his blood so he will remain hospitalized until he completes a 10 course of IV antibiotics. Though he’s on antibiotics now, the 10 days do not begin until he tests negative for the cultures. We are hopeful he won’t be admitted too long but we do know he won’t be home for Thanksgiving.
November 22: Griffin came home!!! He was able to spend Thanksgiving with family
December: Griffin remained healthy all month and was able to celebrate Lorelai’s birthday, Christmas, and mom’s birthday with family!
what a year 2025 was! The Bordner has been beyond blessed . We are grateful to everyone who prayed for us and help us financially through Griffin’s journey. Words will never be able to express our gratitude .
January 2026: Griffin received his first pair of prosthetics! We are excited to have him start the process to learn how to walk!!!
February 2026: Griffin stayed healthy the entire month!!!