The past two days have been very up and down and spontaneous. After settling in to hopefully our more permanent "home" while still in the hospital on the 15th floor, Cohen has continued to show signs of very bad acid reflux. Yesterday they began to feed him again after giving him a large helping of his reflux medicine. They decided to start him off very slowly with about 10ml/hour continuously and then give him 2 breaks throughout the day to see if that would help with his reflux. Yesterday and all last night he seemed to tolerate the food well and was very comfortable based on his monitors and behavior.
But of course, when Mommy walked in the door this morning, that all changed! Upon walking in the door, I always like to check his vitals, as if I too were a nurse. At this point with the amount of time I've spent in these cubicles they call hospital rooms, the terminology and vocabulary I've acquired, and the times I've known more than them...I'd say I've slightly earned that title! His heart rate was slightly high and he was not hooked up to his feeding machine. This could mean one of two things: either he had a desaturation in oxygen and they needed to stop his feeds, or he was on a scheduled break from his feeds. The nurse popped in and confirmed he was on a break...a 6 hour break! This seemed a bit bizarre because what baby feeding via mouth or tube would want a 6 hour break.
At rounds I asked what the philosophy was on this and they didn't seem to really have an answer for me. One doctor looked at me dumbfounded and said, "Well that was in the notes from the nutritionist." Another one commented that yes that did seem bizarre. After 10 minutes of looking at each other back and forth, they decided to start up his feeds again immediately! They also thought that he may be a bit dehydrated and some more IV fluid may help to bring his heart rate down. We also discussed using a steroid that could help lower the swelling on his throat. They agreed that as a team they all felt that these feeding issues were related to the reflux, not an anatomy issue. The reason for his respiratory issues and oxygen issues was due to the swelling from the reflux. The plan was that we would continue to feed him small amounts over a long period of time and monitor his reflux and oxygen desaturations. If he was not able to tolerate this, we would need to consider the gj tube surgery; however, this surgery would have to wait for at least 3 weeks because his previous surgery wasn't even healed yet. The other option they mentioned was to put in a ng j tube which is pretty much the same thing as what he had previously through his nose but it would also go directly into his small intestines. There was no way this was happening because this kid had already had the ng tube and that is why we were at this place now. He couldn't keep his hands off of it for more than two seconds and his nose became so inflamed and swollen from all of the in and out. But at the same time, if he wasn't able to get nutrients, that would have to be our fall back plan if nothing else were to work.
As they all scurried out of our room, I began to feel helpless. This was not working! We were hitting road block after road block and this was the first time I felt that I knew more than some of these doctors. They didn't seem to know all of the answers and they were running out of possible scenarios.
Luckily I have a very smart mom who used to be a nurse. After filling her in on the phone, she suggested we bring in a gastrointestinal doctor since we have yet to meet with one. I started researching some on the computer so I could be better prepared the next time they came around for rounds.
A few hours later he began to really struggle through the feed. His oxygen continued to decrease and he seemed to need constant repositioning to keep his monitors comfortable. I say his monitors because if they weren't in the room, you would've never known that this child was having issues inside. He was sleeping so peacefully and through constant desaturations in his oxygen. The nurses were amazed at this and said that usually when kids do this, they tend to be awake and/or get very crabby. At the time this started happening, his cardiologist came in to check on him. He has been thinking a lot about Cohen and suggested that we really get GI doctor in to see him and help us get a plan for improving his reflux as much as possible. He had read my mind and I was so thankful that someone had my back! He had already put in a call to their office and they would be coming tomorrow, since today was a holiday, to see him.
Throughout the afternoon, we played a tricky game of how to position the baby so his monitors wouldn't go off or he would at least correct his loss of oxygen and change of heart rate. It is currently 10pm and he has already has had his first desaturation since starting his food 40 minutes ago. It's going to be a loooong night!