So after our relaxing day of tummy time and good sleep, Cohen began showing signs of needing to stay just a bit longer. We were feeling positive and hopeful that he would only need a few more days of pampering here, but he felt otherwise. He was finally allowed to have an increase in food by 1ml and did that for about 12 hours with consistent and impressive behavior! No desats and not much refluxing. As I've been getting very fidgety being in the hospital, I paged the doctors to see if we could go up in his feeds, just that one itty bitty drop to make it a good 17mls/hour and they agreed that would be fine. He seemed to do well all night but by morning there had been some changes. His numbers on the monitors were fluctuating a lot and his heart rate was up slightly. I picked him up and was trying to calm him down and he began to cough and then threw up on me. This was a first because he has never thrown up before during a reflux episode. He also had a desaturation.
Later that morning they decided to take another chest xray to rule out any aspiration. It came back clear and looked better than the one upon the day we were admitted. The team during rounds also discussed possibly changing up the level of calories he would receive so that we could lower his volume. It seems that his volume was adding to his reflux and desat episodes. He was tending to have desats after lying down on his back from a diaper change, weight check, etc. I insisted that the nurse put up a note on his bed reminding anyone that works with him to keep him upright as much as possible since it's affecting his breathing. Because he was starting to have more desaturations, the team ordered a salivagram. This was similar to the swallow study he had done early on, but would look at how he was swallowing his own saliva and if he was actually aspirating that. During the hour procedure, the tech let us know that he was not aspirating at all based on what he was seeing; however, the doctors have yet to receive the final We have been begging and pleading to also get another specialist involved that we have yet to see: pulminology. Based on his often rapid and labored breathing there have still been no answers to this and because he has been doing it since birth, it's likely it's not related to all of his reflux issues.
The pulminology team came in with a great plan to help rule out any respiratory issues. They think that because of his constant reflux he may have slightly aspirated and that could be the cause to his labored and inconsistent breathing....but I'm not sold! So they wanted to put him on a steroid inhaler to help minimize any swelling of the lungs if he did have some. They also mentioned that because most of his desaturations are happening during sleep he could benefit from a sleep study to see if he may need oxygen while he sleeps. This would mean coming home with yet another machine for our little guy. They also agree with the team that this may probably be resolved once doing the g-j surgery which would be in another week and a half. If that were the case, many of our problems would be solved at that point and hopefully we can all go home!