So in December some time Luke had a couple of things start to happen that we still don't really have explanations for but they are not happening anymore and didn't happen with that much frequency even when they were happening.
First, he would wake up at night high pressuring his vent by bronchial spams (his airways opening and closing or spasming). When his vent high pressures it is because the vent is using more pressure that we would like to put air into Luke's lungs. This usually happens when he is out of sync with the vent or crying, or purposely trying to get our attention by pushing air back against the vent. Luke would not really be awake during the time. His eyes may open but he was really really trying to be asleep and he was also arching his back and seemed to be very uncomfortable. Holding him may help for a minute or two but that was all. This first episode lasted hours. It was not fun to watch as a mom who could do nothing. The next night was fine though and I was hoping this was just a fluke.
A few days after this we also noticed that Luke's button got really tight and pretty quickly, it seemed like in the space of a couple of hours and the nurse didn't notice when she was feeding him in the morning but I noticed 3 hours later. I just watched it but noticed that there was bright yellow bile coming up from his g-tube when we burped him before the feeding. By that night there was some dark coffee grounds looks stuff coming out from around the stoma and sometimes in the feeding tube. This was not too good but I didn't know what to do and at that point was hoping it would go away soon and I had just eaten something weird that had come through the breast milk to Luke. Well the next day Luke was uncomfortable and lethargic. By the time Kevin got home I was worried but we thought we would watch him for a bit more. By this point lots of coffee grounds were coming from around the tube. He was looking so uncomfortable and maybe it pain, it is hard to tell with a Moebius child who has no facial expression we decided to take him in. His button was super tight and he seemed very bloated. We called the surgeons who put the button in who agreed with taking him to the ER. When we got there the ER doc ordered an x-ray to look at where things were and saw that there was some pocket of something by the tube. He called the pediatric surgeons from DeVoss and over the phone they thought that the coffee grounds was dried blood and this would irritate the stomach and was likely what was bloating it and it is hard for Luke to get rid of excess air because he has a Nissen Fundoplication which pinches the top of his stomach so things can't go back up and possibly aspirate into his lungs. They instructed us, Kevin and I, through the ER doc to take the button out and let things drain and then put the button back in. I like to do as much as I can myself, some people don't want to be the bad guy but I would rather have someone who knows Luke and is comfortable with him and him with them to do stuff too him. Also a lot of docs don't seem very comfortable with Luke because he is on a vent and they assume very fragile. Also I am pretty go to and in your face. So the ER doc was very happy to let us do it. He was finally sleeping at this point which we liked because he wouldn't be so wiggly. Well when we pulled that button out there was a mini volcano of coffee grounds and bile. Luke's stomach immediately went back to a normal size and Luke woke up and started making noise and was his normal happy, playing self. It was like we just turned a switch. I was ecstatic that it was that easy and wished I could have done it from home. The docs gave us a prescription for Zantac to help calm his stomach and sent us home with Malox, I think, until we could get the Zantac the next day.
I remember talking to maybe the pediatrician and I am not sure what other specialist about the night time episodes and the tummy bloating and not really getting any answers. The next time we were at the pulmonologist (which may have been a month or two later) I ran the night episodes, as they were still happening, by the doc and she immediately said she thought it was reflux. They thought that the food was coming up just enough to trigger the Vagus nerve which signaled reflux and protected the airways from aspiration by having bronchial spasms. Even with the Nissen Fundoplication they thought that reflux just a little bit up could trigger the nerve. I have also read a lot about Nissen Fundoplication that fail. The episodes sometimes had a lot of suctioning and sometimes not. The suctioning seemed to go more with the face that the spasms where creating the mucus than any food getting up there so I didn't think the Nissen Fundoplication had failed. I also started making sure he was fed sitting up or at least with his trunk up and leaving him inclined for at least 20 minutes after each feeding. We used towels to incline his crib since the nurses fed him in there twice a day.
These reflux episodes can be minor to severe, I think all in all there were only 2-3 really sever episodes and maybe less than 10 minor ones. However they usually lasted for an hour or more. It was awful to watch and not be able to do anything. Luke couldn't stop the spasms and they would wake him up and then the uncomfortableness of reflux just sent him to a place where no person could sleep.
We continued to take Zantac and got an appointment to see the GI docs. I was talking to the pediatrician about the reflux episodes, they weren't stopping and he offered to prescribe Prevacid. I was wary and didn't want to because I had heard some. bad things about it from other blenderized diet parents. However, when we saw the GI doc (which was in May and this all started around December) she could not say exactly what it was especially because the episodes were so few and far between. She said reflux is difficult to concretely diagnose and she wondered if Luke just had a really sensitive stomach. With all the big episodes, but I don't think so much of the small ones, I had been trying to find anything that could have triggered reflux or any of the reactions we were getting. I had figured out that the big episodes were linked to him accidentally getting 30+ ml more in a feeding or being fed while laying flat. The doc thought this supported the sensitive stomach but since we had recently had a bad episode she wanted to try Prevacid for a month and then no reflux meds and see how things went. I agreed to the Prevacid after asking many questions and being assured that getting off it would be very easy if he did not have reflux but still not too hard with reflux (I had heard stories that once you started Prevacid it would be hard to wean a child off it). Prevacid basically stops the acid production in your stomach which is a pretty major thing to do. But for a month I would try it. After a month we got off all medicine and we have not had any reflux or should I say "reflux" episodes in many months. We will see the GI doctors in a month and hopefully that will be the last time. I am hoping we were just blowing up out of proportion a normal baby digestive system getting used to the world thing.
I was also trying to see if the stomach bloating/tight button episodes were correlated with the reflux episodes (I am a trained research scientist). And for the reflux episodes I never wanted to test Luke by giving him way to much food or laying him flat to feed and seeing what happened because I didn't want to cause him hours of no sleep and pain at night. It ended up that it didn't always happen after reflux episodes at night but also a couple days before a bad reflux episode so we determined that they were not directly tied together.
The bloating episodes were still going on through all of this. Mainly in January and February I would say. We pulled the button out and drained things once with good success. We never got as much out but then we never let it get as far as the first time. One time we pulled the g-tube out to drain in and then put it back in and two hours later he was bloated again. After a couple of times in and out where it didn't make a difference we stopped taking it out when he was bloated, thinking we would only do it as a last resort. We also worried that by taking it in and out often he would lose enzymes and nutrients he needed in his stomach. The bloating episodes could come on in an hour or so and go away during a feeding or another time just as fast. Sometimes they would be all day and sometimes just a few hours. They were usually accompanied by bright yellow bile coming out of the g-tube when we were decompressing before feeding. We never got answers to why this was happening. Their best guess was that the button was irritating the inside of the stomach causing things to bleed and the blood was irritating the stomach which cause bloating.
We are not on medicine for any of these issues and we haven't had a bloating or reflux night episode in months. We thank God for this and continue on. During this, in the middle of January I started introducing real food through Luke's g-tube. By late February I stepped up the food big time and he has been doing great with the food. I stopped pumping in June and ran out of breast milk in August and Luke has had no problem on all cow's milk. I will do a separate post about Luke's blenderized diet even though this was going to be a feeding post, I realized it is a post all unto itself.