Fast forward to a few hours later in the ER, and after answering the same questions for the millionth time: What symptoms does he have? What meds is he on? Did you talk with ______? What did they say? I was exhausted and instantly drained after our short 9 day visit home. The list goes on and on and I was really starting to get sick of hearing my same answers over and over again! They ran another chest xray and another panel to check for any viruses that he could've caught. At this point, I was determined that the results would come back clear with this guy's track record...sure enough they did!
So with a heavy conscious, the ER nurse said she didn't feel comfortable sending us home with his respiratory rate this high. I knew going into the ER again meant we would be having another extended stay and that is exactly what had to happen again.
We traveled again back up to the 21st floor where we were greeted by our nurse. Along the hallway walk Cohen smiled and I apprehensively waved at the previous nurses we had. They gave us the look "why are you back here?" and all I did was shrug my shoulders.
It was very clear that everyone on the team agreed this was again related to reflux and that his breathing was very much sensitive to his feeds. I was not convinced and really didn't think this was related because the bottom line was his breathing had always been an issue since the minute I first held him. The labor and delivery nurses placed him on my chest and he sounded noisy and was breathing quicker than your average baby.
But his team of doctors had always stood by their point that his breathing has always been said to have been related to his reflux. The cardiologists team has always disagreed that his heart was related to his heavy breathing. The pulminologists were able to find in our last stay he had sleep apnea, but still no answer to why his breathing is so erratic.
The plan was that we would talk to pediatric surgery to make sure that he was able to get the GJ(gastro tube put into the intestines) if that's what was decided. He would need to be off of food for a given amount of time so once they got us situated in our room they put him on IV fluids. Our poor little guy had to have another IV put in again, and this time was put into his small little foot.
Well we waited for pediatric surgery to respond to our numerous pages and they never did. After a grueling day of sitting and waiting and crying, sitting and waiting and crying, I had about lost it. My 8 week old, I had to remind them, had not eaten in over 28 hours and to wait for them to not even respond was ridiculous! I guess instead of being so upset all the time, I just needed to get rather pissed. Luckily we had an awesome nurse and she saw me crying and losing it and decided to page the resident again. She came in after the entire day of doing the waiting game and said she was also waiting to hear back from GI because they also wanted to talk to me regarding what had been happening at home.
During our discussion with the GI doctors we again reiterated how we didn't think the GJ was a necessary fix to his breathing. Yes, he did have reflux and was on meds for it, but it didn't seem as bad at home. He hadn't been throwing up with the increased feeds and had never had a negative chest xray proving he had even aspirated. He had passed numerous procedures showing that he was not even aspirating while taking anything by mouth and since he was able to take small taste tests cleared by speech, going through with the GJ tube would be coming from an opposite viewpoint. After they asked us countless questions and had looked again closely at his charts, they did agree with us on a few things. Yes he had reflux but maybe not even extreme enough to be on all of these meds. They also agreed that doing the GJ procedure would not fix his rapid breathing. That has never been show to have been related to reflux unless aspiration has happened and they have never been able to prove it.
And so the puzzle has still not been solved on our special special boy.