Replacing the NG-Tube

Good news! We were finally able to increase Bryce’s Phenobarbital and what a blessing it has been. He is no longer puking during his seizures (I can’t even begin to describe how terrifying that was) and his episodes aren’t as long or strong as they were. Don’t get me wrong, they are still pretty rough and he still cries during them (how can you not cry when you are in that much pain?), but he can FINALLY get a good night’s rest in (which means I can too)! Hopefully the increase helps longer than it usually does.

As I mentioned in the last post, Bryce came down with a cold. Not only did this make his seizures HORRIBLE, but we also had to reschedule his G-Tube surgery. We were so close to surgery day (about two weeks away), so it was quite a bummer for us. This meant that his NG-Tube had to be changed again. After our previous experience in the Pediatric Unit at the hospital. Jus and I decided it would be better if we changed the tube ourselves (scary, right?).

Although we had seen how to put the NG-Tube in, we wanted someone here with us to guide us through the process (which would have made us more comfortable). So we contacted Home Health and asked for a nurse to come over. Now, a little background information. When Bryce first got his tube, his pediatrician sent orders to Home Health to have someone come over and teach us how to replace it and give us some supplies. We received the supplies, but no one came. A month later when the tube was replaced, our pediatrician again sent orders. This time nothing happened. When I called to get some help changing the tube, we were informed that the pediatrician needed to send orders. I was a bit confused, after all he had sent orders twice now. But I called and asked them to be sent yet again. A few days later we received a box of supplies in the mail.

Not going to lie, we were both frustrated! We couldn’t wait any longer to change Bryce’s tube and we were tired of trying to get Home Health to come help us. So Jus and I sat down, discussed what the nurses at the hospital briefly taught us and read the directions for putting the NG-Tube in (they were provided in our box of supplies). Then we said a little prayer to help guide us through the process. It was decided that Jus would hold Bryce in the correct position and I would push the tube in. To say that I was nervous is an understatement, so I said another silent prayer while inserting the tube. I am so thankful for a loving Heavenly Father who was so willing to help keep me calm and focused while I inserted the tube.

Before I started pushing the tube in, we had to measure the length to make sure it made it into his stomach. We used the tube to measure from his nose to his earlobe, then his earlobe to his sternum. Once we had the length, we used a sharpie to mark the tube (once the tube was in, the mark should be visible just outside his nostril).

It was time to insert the tube. As soon as I pushed the tube into Bryce’s nose, he immediately got upset (can’t blame him though, I would have hated it too). I could feel the end of the tube hitting something (I don’t know all the parts of the body), so I pulled it back then tried again. This time it went in smoothly, until it got to his throat. I could feel the tube getting tangled in his throat, so I pulled it back a little and tried again. It went smoothly in all the way to his stomach that time.

Before we could feed him, we had to make sure it was in his stomach, not his lungs. At the hospital they did an x-ray to check the placement, but we didn’t have access to that at home (weird, right?). Instead, we filled a syringe with a little air, placed a stethoscope on Bryce’s belly and listened as we pushed the air through the tube and into his stomach. Relief immediately came over me as I heard his stomach bubble as the air entered it. Phew! The tube was in, and we had done it all on our own (the things we’ve had to learn since Bryce joined us)!

As I held my sweet boy to calm him down, Justin loaded the car with all our bags. It was time to take a little vacation and go see family! Our original plan was to have Bryce’s surgery earlier that week, then once we were released from Primary’s we were going to go stay with family for a few days. Even though the surgery was rescheduled we still wanted to go spend time with family. Once the car was loaded (and I mean it was PACKED!), we hit the road.

Unfortunately for you, this is where I end the post. Don’t worry, I will tell you all about our wonderful trip next week.

            

This handsome boy isn't too excited for his new NG-Tube.