Helping Victor On His Road To Recovery

On January 3rd, 2019 Victor suffered an esophageal laceration, that put him in the ICU for a little over a week. The Gastro Intestinal (GI) group at New Hanover confirmed that he had an extremely rare form of EOE disease (Eosinophilic Esophagitis); meaning an extremely brittle esophagus. The GI group prescribed a steroid inhaler and scheduled a follow up appointment for the end of April. We were left with so many unanswered questions. Mainly, is it safe for him to eat; and, if so, what can he eat?

After a few weeks of using the steroid inhaler Victor noticed that it was hindering his recovery rather than helping. He began feeling extremely weak and sick. Several calls with the GI group raising our concerns still left us with unanswered questions.

(Easter weekend in Southport)

The next few months were tough on our family. The constant fear of eating anything other than strawberry ensure and apple sauce became unbearable for Victor. We powered through and as the end of April drew near, it was time for Victor’s follow up endoscopy. It was Easter weekend and we enjoyed a beautiful afternoon in Southport having lunch with some friends from Charlotte. When we got home, Victor started to complain of extreme heartburn. The next morning, I found him on the couch. He said the heartburn just wouldn’t go away and his stomach was extremely upset. Around 8:30 he got up to join us for breakfast, and within seconds of taking his first bite of food I saw that same panicked look on his face that I did back in January.

We immediately drove to the ED/ER. Upon arrival the nurses rushed Victor back due to the amount of excruciating pain he was in. The doctor immediately started him on antibiotics and pain meds, then whisked him away to do a chest x-ray followed by a chest CT. Shortly after they brought Victor back to his room the doctor returned to give us the results of his scans. 

I could tell in Dr. Silman’s body language and assertiveness that the news we were about to receive was not good. After a deep breath he said “You’ve perforated your esophagus and are leaking into your abdomen. We’ve put a call into the cardio thoracic surgeon”. At that point Victor was pretty out of it and to this day doesn’t remember much after arriving at the ED. There I was, trying to take all of this in and yet keep it together so I could understand it well enough to explain to his parents in Charlotte. 

Once the cardio thoracic surgeon, Dr. Nagasawa, arrived, he began to explain to us that the laceration from January never completely healed and with that a perforation had formed. He continued by saying that he felt the perforation happened 24-48hrs prior, and if we had waited any longer Victor would have become septic and died. I knew in that moment our lives would never be the same again, and all I could do was pray. 

His first surgery would take about 6 hours. They would remove the perforated portion of his esophagus, the top of his stomach and try to clean out his chest. After that was finished they would take him to the Cardiac ICU, where he would remain for about 2 weeks. Victor’s abdomen would be left open with a wound vac on top due to his stomach and esophagus no longer being attached. The next 48 hours were critical, as we prayed for no infection so that the more complex surgery of a gastric pull through could be performed. He would have a few complications over those 48hrs but thankfully he pulled through. He was then able to have the next surgery done that Thursday. We were told that due to the severity of his case the surgery could take up to 8hrs to preform, and it was one in which most esophageal cancer patients would need to have done. They would go in and remove the rest of his esophagus up to the base of his neck and then do a gastric pull through; meaning they would pull or stretch his stomach up into the right side of his chest and it would now act as his “new esophagus”. 

(Cardiac ICU after the initial surgery; removal of the perforation)

After spending the next couple weeks in the ICU, Victor would then be moved to the cardio floor where he would begin adjusting to the many different wires and tubes that were now coming out of his body. We would wait patiently for the first barium swallow test to be performed to see if where they reattach the stomach and esophagus had healed. When the day finally came the results showed that everything had healed as wanted, but unfortunately after being able to drink some water it seemed the test was incorrect and there was in fact a leak/hole. This setback meant he would not be able to eat or drink anything through his mouth until it closed. As the weeks passed with many disappointing test results the only option left was time. Our new goal then turned into getting Victor well enough to have the chest tubes removed so that he could finally come home.

(Healing up nicely!)

(I hope we never have to see these boxes ever again!)

Victor would spend exactly 41 days at New Hanover Regional Medical Center. We would celebrate our 3rd wedding anniversary, his 36th birthday, my first Mother’s Day and our daughter’s 1st birthday. Although very frustrating at times we were just thankful to be able to celebrate together. 

(Many thanks to our wonderful nursing staff on the 9th floor for helping me pull off Sophia’s 1st birthday party at the hospital so Victor wouldn’t miss it.)

Over the next couple of months we would have several ups and downs in the healing process. Another week long stay at NHRMC, 3 ED/ER visits, 3 feeding tubes, a 40+ pound weight loss, several in home nurse visits due to his two tube sites becoming infected, the loss of our Cardio Thoracic doctor (moved to OK), having to get established with a new doctor 4hrs away in Charlotte (due to there not being another doctor in Wilmington able to take on his type of case), a case of pneumonia that led to a flight from NHRMC to CMC Main Hospital in Charlotte, a fistula forming between the remaining part of his esophagus and trachea, multiple incisional hernias forming, a spout of depression, a few week stays in Charlotte, a hurricane and several negative test results.

(Our first visit to back to the ED due to Victor’s feeding tube coming out)

(Daily 9th floor walks)

As fall came upon us we finally felt like we could see the light at the end of the tunnel. Victor returned to Charlotte at the end of September to see his new cardio thoracic surgeon, Dr. Hagen. Before his appointment he would once again have a barium swallow test done; this is a type of X-ray in which you drink a barium sulfate compound and it will light up the upper GI track on the scans in order determine if there are any abnormalities. I’ll be honest, after several negative results in the past we weren’t very hopeful,  but we tried our best to stay positive. Later that day Victor met with Dr. Hagen, and that was when we finally heard the news we had been wanting to hear for the past 5 months... “the leak seems to have healed”. It took a few minutes for it to process, but when it did we all cried. This meant Victor could finally start drinking and eating from his mouth again!

Over the next few months we took things very slowly, and it was back to ensure, apple sauce and soft foods. He was basically on a baby diet and was eating what our toddler was eating at the time, but hey at least he was being able to do it! Due to not being able to eat or drink from his mouth for 5 months he had to retrain his digestive system. Any food or liquid that he had been receiving was through his jtube (feeding tube) that was placed in his intestines.

(Trick or treating)

The beginning of November brought more good news, as he was able to get his JP drain removed. This drain was placed after his initial surgery to ensure that any bodily fluids were drained out so he wouldn’t run the chance of aspirating. Shortly after that we received even more good news, that being the the removal of his jtube. This would mean he would be tubeless for the Holidays, and another step closer to what we hoped would be his last and final surgery (for now), his hernia surgery. 

With Thanksgiving just 4 days away we excitedly prepared for our first somewhat normal holiday of the year. Our family was coming in from Charlotte, we were going to take Sophia to Wrightsville Beach to watch the flotilla and Victor had a week left (literally 7 days!) until his jtube was to be removed. After 7 long grueling months he would finally be tube free and be able to take a shower without me having to wrap him in saran wrap! Unfortunately the Sunday before Thanksgiving we hit another bump in the road to recovery.  

At first we thought he may have overeaten or ate something that just didn’t agree with him but as the night progressed we began to think differently. Mind you we are still trying to adjust to his new normal and understand what and how much he can eat. By the next morning he was exhausted and just wanted to sleep because he had been up all night getting sick. Sophia and I stayed on our normal routine and left for daycare and work around 7:15. Around 9 o’clock I wanted to check in to see how he was feeling, but call after call and no answer. Then finally I heard back from him around 9:20 and I could immediately tell in his voice that something was wrong. I decided to go home to check on him and when I got there he was extremely lethargic, having trouble breathing, pale, weak and could barely even stand up on his own. I helped him to get dressed, grabbed a few things and off to the ED we went.

When we arrived at NH, like before, they took us right back due to how awful Victor looked. Once we were in a room the nurse came right in and started to collect information, and then to our surprise in walks Dr. Silman, the ED doctor that treated us from the very beginning. It took him a few seconds but when he finally realized who we were a sense of relief came over all of us. He again started Victor on antibiotics right away and ordered an abdominal and pelvic CT scan. When Dr. Silman came in with the results from the scans he said Victor had developed pneumonia again. He was confident that this issue would be one that could be treated in Wilmington so we wouldn’t have to be sent to Charlotte again. With a growing concern of how low Victor’s oxygen levels were he put in an order for the pulmonologist to come in. They ended up having to hook him up to a breathing machine to aid in getting his levels back up. At this point a new concern began to grow, that being the fact that Victor was continuing to get sick and no one knew why. 

After hours of going back and forth with different doctors Dr. Silman finally came in to inform us that there was a problem. Since there was no longer our specific Cardio Thoracic surgeon in the area that meant there wasn’t anyone to rule out that what was going on didn’t have to do with Victor’s prior esophageal issues. Dr. Silman tried absolutely everything he could for Victor to be able to stay in Wilmington but unfortunately he had zero luck. Thankfully Victor’s cousin James (who has literally been by our sides throughout this whole ordeal) was able to come sit with Victor so I could go pick up Sophia from daycare. 

As I’m on my way to daycare James calls to tell me that a decision has been made and they were going to life flight Victor to Charlotte. Within the hour he was on his way to CMC Main once again. Thankfully his parents hadn’t left Charlotte to come to Wilmington for Thanksgiving yet so they were able to meet him when he arrived. 

(Getting prepped to fly to CMC Hospital)

Upon his arrival at CMC they would run more test throughout the night. Then the next morning they would inform us that Victor had aspirated into his chest due to a complication with his pylorus (the muscle at the base of your stomach) not functioning properly. This aspiration was the cause of him getting sick continuously as well as developing pneumonia. Victor would remain in the hospital for another week. There were more test to be run, his pneumonia was treated and his oxygen levels finally got back to normal. He would also get a botox injection in his pylorus in hopes that it would relax the muscle to allow him to digest properly again, lessing his chances of another aspiration.  He would be released on Dec 3rd, which also happened to be his mom’s birthday. Great present if you ask me! :) He would then return home to Wilmington later that week. 

(Uncle James helping Sophia facetime with with daddy, Mayme & big daddy during Thanksgiving dinner at Alex & Lawrence’s house. Many thanks to the Blanton side of the family for welcoming Sophia & I with open arms during Thanksgiving. We love you all so very much!)

Following that last bump in the road trip to Charlotte things have gradually gotten back on track. Victor was finally able to get his jtube removed on Friday, Dec 13th haha of all days! We enjoyed our first somewhat normal holiday of the year. We had our first Christmas ever staying home in Wilmington,  we dressed in our pjs and took Sophia to Enchanted Airlie to see the lights and so much more. 

(Soph’s first trip to Enchanted Airlie to see all the Christmas lights)

Victor has his good days and his bad days, as we all do. It is my hope that with time things will fall into place and he will be able to feel somewhat normal again. Until then we will continue to thank God for allowing him to survive this, and enjoy every single moment we have with each other. 

(No more feeding tube!!! A HUGE thank you to Dr. Hall and Allison at NH Inervational Radiology)

I want to start off by thanking each and every one of you for taking the time to read our story. Better yet thank you for reading my journal of our journey this past year :) It was refreshing to finally get it all out, allowing myself to actually read it and enabling me to process it in a different way. 

Since this whole thing began we have really struggled as a family to wrap our heads around everything. We hadn’t even made it a full year since becoming parents to our beautiful little peanut, Sophia, when all of this happened. As many of you know how exhausting the first year can be, now imagine having a sick spouse to add to that, overwhelming to say the very least. As things transpired over the first few months our household income was sadly cut in half due to Victor’s inability to work. From the normal weekly expenses to the larger monthly ones it at times was a struggle but we made it work. Then add a year plus worth of what seems to be never ending medical bills to the mix and those struggles start to take over and begin to compromise recovery. Victor has tried for disability and unemployment but hasn’t had any luck. We truly appreciate any contribution you can make and please keep our family in your prayers. 

Thank you again to our families, all of our friends, coworkers and medical staff for the continued love, support and understanding as we try to get back on our feet and get adjusted to Victor’s new normal. Your kind words and love have meant more than you will ever know. From a simple phone call or text to an ear to vent to, to sweet cards/gifts in the mail, or even a helping hand every little bit has helped us get through some of our darkest days. 

We love you all!! 
Victor, Kaelie, Sophia & Maverick 




UPDATE: 

2/7/20 - Victor’s next surgery is scheduled for March 26th. This will be to remove his large incisional hernia above his belly button. Due to the size and placement (along his digestive tract) laparoscopic surgery is out of the question. His hernia specialist, Dr. Colavita, says that when the surgery is complete he will spend anywhere from few days to a week in the hospital to recover. Once again we will be putting his life in the hands of God, his surgeon and the nurses that will be in the OR as they go in through his previous surgery site.