Liliana Sue

Well, if some of you remember, in one of my last posts I mentioned that I was possably going to get a new feeding tube that would bypass my stomach and hopefully put an end to all of my spitting up. I had been spitting up multiple times a day pretty much every day since I've been eathing through a gastric tube. This is not good because the acid in my stomach will erode my esophagus and lead to increased risk of esophageal cancer. The problem is that because of my neuromuscular condition my stomach does not empty as fast as it should. This allows food to build up and stay in my stomach even when I am through eating. When I would sit up or try to move around and play up it would come. Usually you would be able to take a medication called Reglan to help the stomach empty faster, but with me it did not work and seemed to make me spit up more than normal. So mommy and daddy took me to the doctor to see what we could do about all this. What the doctor suggested was switching my gastric tube to a g-j tube. This tube would go in the same spot as my old gastric tube, but it is longer so that it goes right through the sphincter in the bottom of the stomach and into the jejunum which is part of the small intestines. Supposedly this was going to be a magic fix. However, mommy and daddy were never told about one very important side effect. Without knowing this information, mommy and daddy decided to go ahead with the new feeding tube.
The day came for the placement of the new tube. Mommy and daddy were nervous, because they knew it was going to hurt and because they would not be there to commfort me during the procedure (no anesthetic or sedation would be administered). They sadly left the room as the procedure was getting ready to start. They anxiously waited about 20 minutes for some information. When they finally came back into the room, they saw me crying like they had never seen me cry before. They quickly began trying to comfort me but with little success. Every time a stranger came close to me I got even more upset. Daddy finally picked me up and put me in the stroller. He gave me a toy and lots of kisses and I started to settle down. I never want to go through that again.
We finally got the procedure out of the way and I was ready to see if it was going to work as advertised. Mommy and daddy took me home so that I could eat (through the new tube) and take a nap since I had not eaten in a while and it was well past my nap time. Things were going perfect, and then it started. My first spit up, even after the new tube I was still spitting up. However, this time it would be much worse. I was not spitting up formula, I was spitting up bile. This is that very important side effect that mommy and daddy wished they had known about before the procedure. Apparently, the new tube going through my stomach and into the intestines was not allowing my sphincter to close tightly around the tube. This was allowing bile from the small intestines to back up into my stomach and cause me to spit up. I continued to spit up for a week despite mommy and daddy draining the bile from my stomach through the gastric port on the new tube. The good news is that I was finally keeping all my formula down, the bad news was that I would spit up bile multiple times a day for a week. Mommy and daddy kept getting the run around from my doctors who seemed to act like it was no big deal. If I must say so myself, I think that around 1000ml of bile over the course of a week from a little thing like myself demands some urgent attention. A week later and mommy and daddy still were not able to get the doctors to act. I spit up the morning of that 7th day and my heart rate shot up to over 200 beats per minute. Mommy talked to multiple doctors over a course of a few hours to try and get something done ASAP, still nothing was coming together. Then mommy and daddy took things into their own hands. My nursing agency apparently stocks the feeding tube that I would need to switch back to in order to stop the bile from backing up into my stomach. Mommy drove for a couple of hours to get it. When she got home, daddy pulled out the old one and put the new one in. Besides, it is something that they are going to have to do every few months anyway. These tubes need to be switched every few months and the one that I switched back to to stop the bile is changed in the home anyway. It was either this, or wait to see the doctor in the morning and go through the night with a dangerously high heart rate. It doesn't take a rocket scientist to make that decision. I was much happier when daddy put the new tube in. I felt a sense of instant relief. I didn't spit up the rest of the day. Mommy and daddy also got the doctor to try a different medication to help empty my stomach faster. It's called erythromycin. It's an antibiotic, but in low doses it seems to improve gastrointestinal motility. So far it seems to be working. I've spit up a couple times, but not nearly as much as I used to. I'm much happier now that I'm not spitting bile and mommy and daddy are very relieved as well. So, on to better things. Here are some recent pictures of me. I continue to gain neck and back strength, hence all the pictures of me sitting up. Thank you all for reading