On the Mend: Knox’s Surgery and Health Update
Brought to you by: @Kraytive
Now We Know Things!
About six months ago, I wrote a post titled ‘Where Have We Been?’ when we were in the depths of hospital stays, doctor visit after doctor visit, and seemingly endless diagnostic tests that seemed to lead nowhere. What we knew was that Knox struggled to swallow foods and liquids without choking, he seemed to have some drastic developmental delays, and it seemed like he couldn’t hear us well when we spoke to him.
The week I wrote the post, Knox had been hospitalized twice and we ended up placing a Nasogastric tube and giving him formula to meet his nutritional needs. The tube was meant to be a temporary solution while we worked to combat his food aversions and increase his oral nutritional intake. Honestly, it was most likely the worst month out of this entire journey. I knew my child was struggling, but I didn’t know why. I didn’t know what to do to, and I felt helpless as a parent.
I just kept taking Knox to appointment after appointment.
He had two swallow studies that showed that his epiglottis (the flap in your throat that closes off your airway while you eat) sometimes ‘forgot’ to close while he would eat or drink, causing him to choke. Next we would try to figure out why that was happening.
He had an MRI to see if there were any neurological abnormalities in his brain. It came back normal.
He had an Upper GI Test, where barium was pushed through his NG-Tube and filmed with an X-Ray to show that his intestines were working properly. We found out in this test that Knox had something called ‘Intestinal Malrotation,’ a potentially fatal problem where the intestines could twist and rupture if not corrected through surgery.
We saw so many specialty doctors, and after many tests with very few answers one of the Neurology Doctors we were working with asked that we try a genetic blood test as a last resort.
The test came back with a diagnosis that explained everything.
The Genetic Test
We learned that Knox has a very rare DNA deletion of part of Chromosome 1, in the region that dictates PBX1. There have been only fourteen diagnosed cases of this genetic deletion, and it affects swallowing, food volume intake, developmental delays, muscle tone, organ placement, hearing, kidney issues, and cardiac issues.
We scheduled a renal ultrasound and EKG immediately and they came back completely normal. We saw an audiologist and learned that Knox had moderate hearing loss (likely due to congestion in his ears). We decided that it was necessary to place a G-Tube in Knox’s stomach as a long-term solution for nutrition, and schedule an immediate surgery to fix the malrotation and ear tubes.
We were in disbelief that we finally had the answers we had fought for for so long, and that a lot of the struggles that Knox was facing were correctable through surgery.
Surgery… Or Not?
We were urged by doctors to get surgery scheduled immediately due to Knox’s malrotation and how potentially dangerous it was. We were told that if his intestines kinked or twisted, he would need to get into an emergency surgery (called the Ladd’s Procedure) within 6 hours or it could be fatal to him. We live about 2 hours from the hospital, and we were now worried on a daily basis. We didn’t take this news lightly and called the hospital frequently to try to get it scheduled. Because Knox is so small and young, we also wished to schedule his other procedures (ear tubes and G-Tube placement) at the same time to minimize the amount of anesthesia he would undergo.
Weeks passed and the hospital we were working with couldn’t promise a surgery date. Two months passed. No surgery date. We started seeing news articles that our hospital’s Operating Rooms were shut down due to mold in their ventilation system. When speaking with doctors, they said we would be scheduled ‘soon.’ After about three months of waiting, and hearing the same ‘we can’t promise or schedule a date for surgery at this time,’ enough was enough. Knox had started having issues from his NG-Tube and he was losing weight, and we didn’t want him to go months more without being able to hear us at this critical development period in his life. It was such a frustrating time for us, and ultimately we felt that the hospital was more concerned about keeping Knox as a patient versus putting his well-being first. We consulted with our pediatrician and decided to switch hospitals.
We met with the Director of Surgery at the prospect hospital and we instantly knew it was the best choice for Knox. We were able to schedule the surgeries within a couple of weeks of meeting our surgeon, pending that we meet with each specialty doctor. This new hospital went above and beyond to come together to schedule all of the procedures at once and put Knox’s health first.
We scheduled the date for February 12th.
It’s Go Time!
We checked in bright and early (well, maybe not so bright) at 5:00AM down in Seattle on February 12th for Knox’s Surgery. He would have the Ladd’s Procedure, G-Tube Placement, and Ear Tube Placement all at once, and would remain in the hospital to recover for about a week. The goal would to try to complete the main procedure laparoscopically so he would not have a large incision on his abdomen. My father-in-law, Will, flew up to be the support system for Tanner and I, which gave us a sounding board to lean on and keep us calm throughout the day.
The morning went by quickly. By 6:00AM we were filling out paperwork and by 7:00AM we were with Knox in pre-op, playing with Hot Wheels while we waited. Tanner and I waited with Knox in a small, empty, waiting room when the anesthesiologist came in to chat. Because Knox is so young, they had me gear up to go with him into the OR to make putting him under anesthesia more comfortable for him. The room was so bright and clean, and I sat with Knox in my arms on the operating table and held him as he quickly fell asleep. He went down easily, but I still couldn’t stop myself from shaking as I left the room to return to Tanner.
We met with Tanner’s dad, Will, and spent the first hour of the surgery in the cafeteria to eat and be nervous together.
Tanner and I returned to the waiting room and waited for about 3 more hours, and we asked a nurse for an update. She returned to let us know that they were just finishing up the surgery and we could see Knox shortly.
He was pretty irritable waking up, and we noticed a very large 3-4” incision across his abdomen next to his new G-Tube.
The surgeons came in and explained that they started the Ladd’s Procedure laparoscopically, but within 30 seconds realized that his intestines were already in the ‘dangerous’ position and kinked at the bottom, distending his abdomen. The malrotation was much worse than they had expected, requiring them to open up his belly to complete the surgery. They removed his appendix, placed the G-Tube successfully, and placed his ear tubes successfully.
We took Knox up to his recovery room, where he slept for the rest of the day.
Our Hospital Stay
We spent the next week taking each day one at a time. Knox’s intestines took about three days to ‘wake back up’ and the surgeons and nurses taught Tanner and I everything we needed to know about the G-Tube and Knox’s recovery.
Knox was in quite a bit of pain, so he was on a set schedule of Tylenol to manage his comfort levels. Within a few days he was taking some wobbly steps with our help, and by the end of the week he was able to walk to the end of the hospital hallway on his own.
Tanner had to go back to work at the end of the week and I was able to work from the hospital while Knox slept, which helped me keep my sanity throughout the week. The hospital staff was wonderful and compassionate, and brought Knox a bag of cards and treats on Valentine’s Day.
After a week we were ready to go home.
Home at Last!
The first week home was exhausting. Knox seemed to regress and did not want to do anything on his own. Everything resulted in a meltdown, but it slowly got better in time as we all adjusted to our new G-Tube feeding schedule.
One month later, and Knox is back to his normal, goofy self. We have noticed a major difference in his speech and last week he surpassed his pre-surgery weight! His incision has healed nicely and he loves to help with his own tube feedings throughout the day. Getting him involved with this process has made the adjustment so much easier for all of us! He is getting the majority of his calories from formula through his tube, and we will slowly switch to ‘normal’ foods.
Overall, we are so glad we trusted our gut-feelings are parental instincts on switching hospitals and getting Knox the care he needed. He will be starting at a Developmental Preschool in September of this year for special needs kiddos and we feel that being in a classroom setting will make a massive contribution to his development.
A lot of people we know have asked us ‘How do you guys do it?’ when we are faced with the obstacles we have faced the past couple of years with a special needs child. The truth is, we don’t know any other way! Knox is our first kid, and he is all we know! No matter what, we want what is best for him, his health, and his happiness. All of the hard stuff seems so small when we hear his sweet giggles or see his smile. He teaches us how to be better parents every day.
I am so lucky to be Knox’s mama and look forward to continue learning and growing on this journey with him as time goes on.
Thank you for reading and for supporting our journey!
Have a kraytive day!
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