Here we were. Staring down the barrel of the obstacle we had been trying to avoid for the past three years: a gastrostomy tube (G-tube). I spent so much time worrying about what the moment would feel like. I thought I'd feel like a failure. I thought I'd feel sadness. I thought it would feel like the worst thing in the world.
The truth is, I was feeling everything but sad. I was excited -- beyond excited. I was ready and eagerly awaiting Major's surgery.
We didn't fail. We worked so hard. Major worked so hard. His lack of eating was just part of being a toddler, and, with CF, being a picky toddler just doesn't fly. Rather than failing, we were, in fact, winning! We had a tool that could help Major immediately and save him stress and allow him to gain the weight he so desperately needed.
The next step was to tell Major. My husband and I wrestled with the timing on this. When do you tell a 3-year-old that they are having surgery? It's a fine balance between giving enough time to process, but not giving so much time that your child is anxious and more fearful than need be. One thing you should know about me is that I don't do parenting books. Save for requested advice from friends, I'm winging it. But, to prepare for this announcement, I had a chat with our child life specialist and then formed a plan. We decided to tell Major five days prior to surgery, which gave him two school days and a weekend before going in. Plenty of time for questions!
Drew and I made the G-tube (or superhero port, as well call it) the best darn thing to happen to Major! We told him how cool it was going to be to get some food overnight, how good he would feel, and how amazing his new superhero powers would be. By the time surgery day arrived, Major was ready to go and walked himself right into the surgery room. I was a bit of a mess with him going under anesthesia for the fifth time in his life, but moms worry.
After an hour in surgery, we were notified that Major was done and resting in recovery! The hardest part of the surgery was not eating -- note the irony here for a kid who didn't love to eat. He not only had to fast the night before surgery, but also for 24 hours after to allow healing time. Lots of distractions helped him get through this, including a special toy delivery from our local CF Foundation chapter.
Learning to use the G-tube was yet another thing that was not as hard as I had feared it would be. Identifying a few other feeding tube moms that could help answer my questions was so important. Major was quickly proud of his G-tube, showing it off to anyone who wanted to see it. He took charge of his tube as best a 3-year-old could, handing us cleaning supplies for dressing changes and telling his doctors when he was in pain.
Within one month, Major gained two pounds. Two pounds! He had never gained a full pound in three months, so this was truly incredible. If there had been any lingering doubt about our decision, it was now gone. He has now had the tube for four months and continues to grow and gain weight. He is confident with his tube, able to do any and all activities he wants to do, and has no ongoing pain. Aside from adding one more “to-do” to his plate (no pun intended), life with a G-tube has been pretty slick.
Major is a new child. He's more energetic, laughs more, runs more. He's louder, crazier, and funnier than ever. Our hearts have burst over and over watching Major come into his own since getting the tube.
With the happiness has come some pain. We have realized that although Major seemed high energy and goofy before the surgery, he wasn't living to his potential. Within a week of getting his G-tube, he blossomed into the boy I described above. His energy and personality have grown so much that his teacher teared up on his first day back to school. Everyone comments on this wonderful change; and it is just that -- wonderful. However, my husband, Drew, and I can't discount the pain in knowing our little boy didn't feel the best he could have prior to getting the tube.
With that said, we got that superhero port at the exact right time for Major. Getting used to the idea, discussing with our CF care team, and not dragging our feet all led to the right decision at the right time for Major. No matter how long Major has that G-tube in his tummy, I will forever credit it with giving him his best life.
