Plan B was set in motion and Cohen was supposed to travel in his baby throne upstairs to The Floor. In hospital terms when ICU nurses or docs talk about "the floor" they are talking about the less intensive hospital floor where the ratio of patients to nurses is 5 to 1. Everyone was very excited last Friday and expecting him to vacay on the 21st floor on Monday for a few weeks until he was able to gain weight and be more stable and comfortable for transporting back home.
Well as we all know by now, Cohen doesn't always exactly like to follow THE PLAN. Over the weekend he became increasingly irritable, upset, and every other synonym you could possibly think of for this. He wasn't sleeping, was unable to do any type of physical therapy and even his regular nurses were commenting on how different of a kid he was. We had been increasing his feeds and changing his formula, as well as still trying to wean him from Methadone and Ativan. He was dry-heaving every few hours even though we were no longer feeding him from his stomach and he was unable to be alert and happy at the same time. It was hard to say what was causing this change but we continued to bring up this drastic change during rounds each morning and doctors were hesitant to look deeper. Finally on Tuesday morning, they agreed maybe we should get an x-ray of his abdomen since it seemed to be GI related.
The x-ray showed that he definitely had some stool in his bowl and possible air (Pneumatosis). This was quite worrisome to us but also at least would help answer why he had been so upset for the past few days. GI and Pediatric Surgery came to consult and decided to go NPO (no food) for 48 hours. They would need to monitor his bowel with many x-rays and antibiotics to make sure it did not persist and improve or it could lead to further complications for Cohen.Pneumatosis was common in kids with feeding issues, jtubes, but also could be a sign of something else that was wrong and we needed to rule this out.
I was upset, outraged, and worried. This little guy could never catch a break! His only job right now was to sit tight and pack on the lbs and he couldn't even do that. If it wasn't for an amazing nutritionist, Laura, who follows Cohen, I would have been riding solo arguing with the doctors over whether or not we could start TPN (Total Parenteral Nutrition). For even a few hours it was sabotage to Cohen to hold his food. If we had to hold off on feeding him through his stomach or intestines, at least he could get something through his veins to help combat the lack of food.
Yesterday they did a J-tube study to make sure that his jtube was properly positioned and not causing any of this new discomfort. They had found a kink in his jtube causing the formula to be pushed back into his stomach slightly. They switched it out for a new one and are hopeful this was partially the cause to his grumpiness.
Fast forward a day and Cohen is back to his happy self. He is smiling daily. With an empty belly he seems to have stopped the dry heaving, is less fussy, and doing what babies should be doing: smiling, cooing, and flailing appendages. The doctors took close note of these improved changes. Today during rounds he has passed the 48 hour mark and was able to start chowing down on some fortified formula :) We agreed as a team that we only change one thing at a time to rule out the cause to his fussiness. We would start him back on the same formula but at a very slow rate and work him back up to his normal goal. We also would hold off from weaning him of any meds until tomorrow to make sure he was tolerating the food better and it wasn't another variable added in.
So for now we are content. Although he was unable to go vacation for a few weeks on The Floor, we are happy he is having a content Stay-cation on the 16th!