Kaleb Prinz: Tummy Tales Part II

Nobody enjoys having a child spend time in the hospital, but Tuesday was, by far, the worst day of the whole experience. The plan for the day was a "quick" trip to Interventional Radiology for replacement of the GJ tube, restart feedings/tolerate well, and go home by the end of the day. It was a really good plan. Mid-morning they took us down for the procedure, and I was fairly optimistic but worried at the same time. They strapped him to a board just like the one for his Upper GI from days earlier. If you imagine a piece of plywood the width of his body, with 2 metal wheels on the ends for turning similar to a rotisserie oven, you've pretty much got it. Then they pull his arms straight up by his ears, and apply the Velcro straps across his forehead, waist, and legs. Of course, that's when the screaming started, and I absolutely don't blame him. We've seen the recovery from 2 open heart surgeries and several general surgeries, but this is the procedure I can't get out of my head. As you can imagine, I tried everything I could to calm him, but nothing worked.

The idea was to feed a covered wire through the G-button stoma, past the stomach, and into the first (about) 10 centimeters of intestine. When(if) that was accomplished, they would feed the GJ tube along the wire, pull the wire out....and wa-la! The first Radiologist began confidently enough, but right away got stuck in the stomach. Within a few minutes of not being able to get through the pylorus(part that connects the stomach to the small intestine), she became increasingly flustered until she finally gave up, and tried to explain why it wouldn't be possible for anyone else to do it. Luckily, the tech and I convinced her to let another Radiologist give it a try, and it turns out the 2nd guy was actually the best guy they have at Children's. He came in very confidently, arranged slightly different equipment, and encountered the same problem with the same result. After 23 minutes 13 seconds of radiation and a little more than an hour strapped to the board, they let me have him. He was so exhausted from the whole thing, he fell asleep before I could even get him off the board, and continued to sleep for 4 hours. I was so upset, I didn't let anyone touch him for the entire nap.

As with many of the procedures Kaleb has experienced, the intervention was necessary; this one was also unfortunately unsuccessful. The reason I was so upset was because he had to endure this procedure without anesthetic or anything to alleviate anxiety. As parents, we know our children the best. About halfway through the procedure, I asked the radiologist and tech if my nurse could come give Kaleb something and they said NO. "This procedure doesn't usually require anything" they said. Well, I'm just the mother after all(said with extreme facetiousness), but from my vantage point my child was not only terrified, but also very much in pain. I let it continue because I knew the alternative was surgery, but no one will ever convince me that it couldn't have been handled better.

The rest of the afternoon, as Kaleb slept, Cardiology/Radiology/GI teams went to work figuring out what the new plan would be...apparently completely separately, though. Within the first hour, GI came in twice with the new plan-surgery the next morning to replace the tube and receive an injection of botox(yes, you read that right!) to temporarily paralyze the pylorus and hopefully allow better gastric emptying. Shortly after that, my nurse came in to tell me that it had been arranged for Kaleb to receive a stomach spasm medication and Interventional Radiology was going to try again----what?! He ran off to verify, and the Attending Cardiologist came in to tell me that we were getting ready to have a terrible storm, and she wasn't sure how they were going to DISCHARGE us safely that evening...huh? No one had bothered to tell her that our morning procedure failed. Needless to say, everyone started communicating more effectively after that, and I had my only laugh of the day.

All areas deferred to GI, and the surgery was set for Wednesday morning. At this point, Kaleb hadn't had formula in more than 24 hours, had 2 failed IVs throughout the day, and even the IV team said he didn't have any veins left to work with....Tuesday was AWFUL!! All I could do was hold him, tell him how much I loved him, and how sorry I was over and over again. It couldn't have been enough. All day long(when he wasn't passed out), he cried and said, "Mama" hundreds of times. I love hearing him say that so much, but on this day, it felt like someone was ripping my heart out and stomping on it every time.

Thank goodness for daddy! He knew what a tough day Kaleb had, and he called our church to see if someone could visit us that night. We don't say this enough on the blog or Facebook. Prince of Peace Lutheran is AMAZING! They have been praying for our family since before Kaleb was born, visited us countless times at the hospital, and even prayed with us at home when we needed them. Thank you God for leading us there for our church home. This night, Pastor Landon came to see us. He listened to us, loved on Kaleb, and prayed with us until much of the day's awfulness faded away. We particularly enjoyed seeing pictures of and hearing about his new baby girl, Noa.

Karl spent the night since Kaleb was having surgery the next morning, and we ended the evening with a bit of Kaleb's latest obsession---Handy Manny! He loves it! The surgery and everything we learned from it, is a story for the next time. Thanks so much for praying for and loving our family!

One day, one hour, one minute at a time,
Jenifer