Episode 10: Our last dance with Nutriport
(click photo to see each image)
Aug 22nd of 2018 was the day that our G-Tube adventures began. Olivia was only 8 months old when she had her first of 2 surgeries to place a G-Tube. I wasn’t excited about the idea of surgery, but unfortunately, it was necessary because she was unable to eat due to her recent muscle-tone loss. While sedated for the surgery to replace her Broviac line with an IV subdermal port on Sept 19th, they replaced her temporary G-Tube for a Mic-Key button (a twist-lock system). It may have been the surgeon’s preferred brand of G-Tube, but it wasn’t long before we developed the opposite opinion. Our troubles began when Olivia started to grow a lot of granulation tissue around her insertion site. At first, we were annoyed by the irritation the button was causing her, but it wasn’t enough to warrant changing brands. The final straw came one day when the extension tube popped out while I was administering her anti-seizure meds. After discussing our concerns with her medical team, we moved forward with our plan to switch out her Mic-Key for a Nutriport (a push lock system). On Oct 5th, 2018, we officially began the first day of our Nutriport honeymoon period. In the 2 years that followed, things appeared to be going well. We didn’t have to worry about unintentional tube disconnections, and the frequency and intensity of her granulation tissue had decreased. I had high expectations for our future with Nutriport until August 29th, 2020. That day her button failed after only being inserted 63 days prior. Initially, it struck me as odd because I was under the impression that it should have lasted at least 90 days, so I shrugged it off, assuming that the failure was due to human error. Another 83 days had passed, and I was beginning to feel like we had encountered some more bad luck when another button had failed. Although I felt a false sense of security because that button had lasted longer than the previous one, I couldn’t shake the feeling that something was off. On Jan 23rd, 2021, my doubts were confirmed when I was forced to replace another G-Tube button after only 64 days of use. In the weeks that followed, I found my anxiety gradually increasing because of the uncertainty surrounding the quality of her current button. I had assumed that the button would fail early, but I wasn’t expecting it to give out after only 41 days. That is what happened on Mar 5th, 2021. I knew that, at our current rate of failure, in a matter of months, we would use up our entire year’s supply of buttons. It was a frightening thought, so I sought out the help of our social worker to make it right. We managed to get 3 of the defective buttons replaced, and we also scheduled an appointment on April 16, 2021, with the surgeon who placed her first button. During that appointment, I learned that we were initially given false information about how long a G-Tube button should last. After her first Mic-Key button was inserted, we were instructed by someone at the hospital to replace the device every 30 days. After expressing our concerns over the expected frequency of button changes, that same person suggested that we switch to a Nutriport button because it only needed to be replaced every 90 days. Hearing that information, we were excited to make the brand switch because that meant we wouldn’t have to torture her every month with a button change. Fast forward to my conversation with her surgeon on the 16th, and you might get an idea of the level of frustration I felt when finding out that the buttons should have been lasting a minimum of 180 days. After the surgeon examined Olivia, he concluded that the issues we were having were the direct result of the Nutriport button, and he recommended we switch to a different brand. Armed with the new information, we went home intending to research what our next G-Tube brand would be, but I got sidetracked with a zoom call and forgot about it. Little did we know that within 6 days, our Nutriport honeymoon period would come to an end.
(click photo to see both images)
This brings me to the events of April 22nd, 2021. After only 48 days of use, another Nutriport button self-destructed, only this time, things did not go smoothly. That morning when I got Olivia out of bed, I had noticed that her G-Tube button was looking a little looser than it usually did. I tugged on the device to make sure that the balloon was still intact, but because it didn’t pop out of her tummy, I just assumed that the balloon needed a top-up. I Layed her down on the couch and played a movie for her while I got her morning meds ready. That morning I was alone with Olivia. Chris had recently gone off to work, and we didn’t have any nursing help scheduled for the day. While I was preparing her meds, I looked over to Olivia to see what she was doing, only to gaze upon something dreadful. Although it was technically still attached to her because of the securement device, her G-Tube was completely out of her body and standing upsidedown (like a tiny gross antenna). A feeling of panic swept over me as I rushed to her side. I grabbed my phone and attempted to call Colleen (our upstairs neighbour), but she wasn’t awake yet, so I left a slightly frantic message on her voicemail. Out of frustration and desperation, I sent a message to Chris saying that her G-Tube had fallen out. To my surprise, when I told him that I would attempt to insert the new button by myself, he insisted on coming home to help me out. By the time Chris had arrived home, and we were ready to insert a new button, it had been approximately 30 minutes since the old button fell out. In the past, we had left out her button for a few hours to let the hole shrink, so I figured that 30 minutes wouldn’t be an issue. Once again, I was proven wrong. Her hole had shrunken just enough to prevent her button from actually going in. After failing a couple of times to insert the button (which caused her hole to bleed), Chris tried his best to salvage the situation but was also met with failure. With every attempt, her screaming intensified, so we did our best to comfort her as we continued to push forward. As I was making my final unsuccessful attempt, Chris could see that I was becoming overwhelmed and flustered, so he offered to give it another try. For some reason, I was paranoid that he would drop the button, so I offered to lubricate it for him, but in my panicky state, I flung it across the room, and it landed on the floor. As I watched our only button take flight in slow motion, I immediately knew that we could no longer solve this problem at home. I inserted a foley catheter into her hole to prevent it from shrinking more and then proceeded to get us ready to go to the hospital. I don’t recall the exact time, but after Chris had offered to come home, Colleen heard my voicemail and came downstairs to help. If you remember from my last post (April 2021: chaos, anxiety and joy), I mentioned that I had purchased a new car seat, but I did not open it yet. That decision would come back to haunt me. Thankfully Colleen graciously volunteered to assemble and install the car seat in our vehicle while we were frantically getting ready. We left our house around 8:30 am, and by 9 am, we were settled in an ER room waiting to see a doctor. Chris, unfortunately, had to wait in the car because of COVID restrictions at that time, only allowing one visitor per patient. While we waited for the doctor to come by to insert her new G-Tube, her medical team was scrambling to find a Nutriport in her size. Coincidently the only button in her size was a Mic-Key, so we decided to switch back to the brand we had intentionally avoided for more than 2 and a half years. Because of my bias against Mic-Key buttons, I had decided before the new button was even inserted that I would be switching brands as soon as possible. To my surprise, I quickly began to appreciate the Mic-Key button and eventually decided to keep it. That was the day that Nutriports reign of terror was over. That day I also learned a valuable lesson (one that might potentially help us avoid a future ER visit). When I watched the doctor flawlessly insert the new G-Tube button, it had become clear to me why it looked so easy. To be honest, when I realized that I already knew how to solve the problem, I felt a little dumb. I even beat myself up over it for a bit before deciding to give myself some grace (deep down, I knew that my forgetfulness was due to the morning chaos). The solution was quite simple. The reason why the doctor was able to effortlessly insert the new button, was because the catheter we had inserted more than 2 hours prior had stretched the hole back to its proper size. After her new button was inserted and the doctors were happy with how she looked, we headed outside to meet up with Chris (who was patiently waiting for us by the car). Before we knew it, we were settled in back at home, and the whole morning had begun to feel like a weird dream. What had started as an extremely stressful day turned into a beautiful one full of pizza, cuddles and Disney movies.
Jun 22nd, 2021
By now you might be wondering how we managed to insert the catheter in her hole when a G-Tube of the same size wouldn’t fit. In my opinion, that would be due to a design flaw that the G-Tube button has. Unlike the catheter’s tapered tip, which is designed for insertion in smaller holes, for some reason, the Mic-Key button has a straight tip (which is only a problem if the hole has shrunken). Because of that flaw, on more than one occasion, I have found myself struggling to insert a new G-Tube, and as a result, causing her some minor external tearing and bleeding. So, if someone from the company Avanos (the maker of the Mic-Key button) happens to read this blog, please make the button tips tapered. That would be greatly appreciated by both Olivia and myself.
During our 10 months of bad G-Tube luck, we ended up switching out a total of 5 defective Nutriport buttons before finding our way back to a Mic-Key one. To our delight, that Mic-Key button lasted almost 10 months before we decided to switch it out for a new one. Hopefully, we will continue to have good luck now that we’ve switched brands, but only time will tell. This experience has reminded me that sometimes bad luck is the direct result of the choices we make, and with the absence of change, our luck remains the same.
