A crappy way to start a new year
Jan 17th, 2021
It had only been a couple of days since we switched her from Compleat Pediatric to Peptamen Jr, and I was feeling optimistic about how things were going. After doing some research in December, I thought I had found a food that would help to reduce her reflux, but I was about to find out how wrong I was. By the 3rd, her bowels were starting to pick up speed, and by the 5th, she was exploding a putrid liquidy sludge out of her backside multiple times a day. I was starting to feel pretty confident that the new food wasn’t going to work, but I wanted to know for sure, so I decided to finish off the case of Peptamen that was given to us. There were only 4 more days worth of food, and I figured things couldn’t get any worse, so I proceeded with my plan. Her diarrhea continued to pick up speed, so I started to supplement her with Pedialyte. Her bowel movements had become so massive and unpredictable that we decided to refrain from dressing her in anything other than a diaper. Although it had been a brutal and nauseating week of dealing with the mess that her body had created, it still wasn’t as bad as the Nexium episode (I’ll talk more about that in an upcoming episode titled “An $87 mistake”). During the first week of January, we had almost no nursing help, but once we acquired a new nurse on our team, our situation had improved a bit. Dealing with Olivia’s digestive troubles without any help had proven to be far more exhausting and stressful than it needed to be. By the 9th, we used up our last tetra of Peptamen, so we switched her back to Compleat Pediatric. We once again held our breath while we hoped for the best. Within the first 24 hours, the frequency of her bowel movements had decreased, and after 48 hours, her stool was starting to thicken up again. We were cautiously optimistic about the results because she frequently likes to keep us guessing. As we approached her doctors’ appointment on the 13th, I was feeling nervous about what her blood work might say. Anytime she gets diarrhea, there is an increased risk of her developing a metabolic crisis because of the dehydration and decreased electrolytes that come with it. Thankfully her blood work looked great, and her bowel movements continued to improve. In this case, a crisis was literally averted.
Jan 17th, 2021
The events of the previous few weeks had taken a toll on Olivia’s energy level. Although she was dealing with more mental and physical fatigue, she was still in good spirits. On the 14th, just before bedtime, Olivia had a short seizure (which was most likely brought on by fatigue). On the 21st, she accidentally inhaled water through her nose while taking a bath. We thought that she had cleared all the fluid from her lungs, but that wasn’t the case. Over the following 72 hours, she was feeling more fatigued, and she was also vomiting more secretions. Around 3 pm on the 22nd, she vomited up a mixture of blood, mucus, and oral secretions. Shortly after her bloody vomit, she had another seizure (which could have been caused by the stress of vomiting). In the days that followed, she had a couple more episodes of bloody vomit, but by the 24th, she was feeling much better. Her vomiting had gone back to what it was before the 21st, and it was clear by her playfulness that she was feeling much better. During that time, Olivia was also experiencing more G-Tube leakage than normal. We did our best to troubleshoot the problem, but the excessive leakage was a mystery to us. It had only been 2 months since we replaced her button, so at that time, we felt that the issue wasn’t with the device. I had hoped that the extra G-Tube leakage would resolve on its own, but that wasn’t the case. In the morning of the 23rd, before we could even get breakfast on the table, Olivia decided to get up to shenanigans. As Chris picked her up off of the couch to place her in his lap, she screamed out in pain. Her feeding tube had gotten snagged on something as he picked her up, and the device was pulled clean out of her body. Apparently, there was a pinhole leak in the G-Tube balloon, and anytime her button was pulled to the side it leaked a bit. By the time Chris had picked her up, the balloon was mostly deflated, so it didn’t take much effort for the device to be pulled out. I quickly got her replacement G-Tube ready to insert, and Chris kept her calm while holding her down on the couch. As usual, Olivia screamed out in pain as I inserted the new device into her belly. Regardless of how many times I’ve replaced her G-Tube, the experience is still incredibly traumatizing for all of us. Thankfully she forgives us quickly once the cuddling begins. At some point, during the morning of the 28th, Olivia developed a nosebleed. As the day progressed, the blood slowly pooled in the back of her throat before traveling towards her lungs. Around 10 am we saw the first sign of her nose troubles when she coughed up some thick mucus mixed with blood. The pooling did continue, however, Olivia managed to ignore it for several hours before it became too much for her. By 345 pm, she couldn’t ignore it any longer, and she vomited a large amount of blood and thick mucus. Immediately afterward she seemed happy and settled, so we decided to keep a close eye on her at home. Thankfully by the next day, her secretions had returned to normal, so we managed to avoid another hospital visit. January had come roaring into our lives like a storm, and before we knew it, it was over.
