Yesterday resulted in both good and bad news. Cohen had two procedures to again rule out any other crazy business he had going on in his lungs. This was also the second time he has been put under anesthesia in his short little lifespan. The pulminology doctors performed another bronchoscopy but this time using a more flexible scope to look deeper into his airway, even venturing into the different sections of his lungs. They also squirted in saline and then extracted it to be able to process it in labs for any bacteria or to show proof of aspiration. Meanwhile he also had a CT lung scan. This would help the doctors look more closely at his lung tissue and to see how the air exchange was being processed.
I waited in the waiting room for what seemed like an eternity, ideas passing through my mind continuously as to why we were doing another procedure and still about to have no answers, because I know this always happened. The two PULM doctors came out after about an hour with smiles on their faces. This told me that he was doing well, but also that they had probably not found anything. And I was correct. Once again our Mystery Man had proven us and the docs wrong. They had found some mild bronchial malasia but nothing that would indicate this rapid and noisy breathing. They also found that he had a anatomical duplication of two lobes in his lungs but again nothing that would cause this breathing.
We were back to the beginning yet again with no answers! How could this be happening AGAIN??? The pulminologists looked stumped. Another set of specialists that were completely mind-boggled by my son. They explained what they felt to be his diagnosis...at this point..a little bit of everything can make a BIG problem like breathing quickly.
-He has a little hole in his heart that may not ever need surgery.
-He has a little reflux.
-He has a little bronchial malasia.
-He has a little sleep apnea.
All of these things very well could be coming together to create a rather large problem. A problem that has been with us since day 1. The more we looked around, the less we found and maybe because it was in front of us the entire time. We have been trying to look for this HUGE discovery, but maybe there never would be that huge discovery because there wasn't even one to find.
After the disappointing yet happy news, the docs started talking again about discharge...though within a few hours, they had completely changed their opinions, wanting to rule a few more things out to be safe, before we went home. They ran one more sleep study to make sure they hadn't missed anything from about a month ago and then they also decided they would consider measuring the acidity of his stomach acid by performing a PH probe study. In order to do this though, they would need to take him off of his acid blocking medicine for 72 hours to make sure that the study was accurate without any meds affecting the outcome.
The sleep study went well, if you can say that since Cohen screamed on and off most of the night. We are still waiting the results from that. He had his last dose of medicine yesterday afternoon. Now I expressed my concerns to the resident because taking a kid off of reflux meds who seemed to really need them made me very nervous. I know they needed to do it for the study, but part of me was wondering if he was going to be in agony refluxing continuously with nothing to protect him.
So when I came to the hospital this morning, I was expecting there to be mayhem with this little guy. He had been off his meds for over 12 hours so I knew I was going to see throwing up, lots of coughing/gagging sounds, painful cries and some desaturations in his oxygen. As I'm writing this though, it is 8pm, almost 18 hours after being off all meds, and the child doesn't seem any different. Hmmmmm..... you may be saying to yourself as I have done all day in my head. But why? Well as I was wondering the same thing, I decided to start looking back at my spreadsheet of Cohen's medical history. This wonderful ideas was given to me by a co-worker (Jessica :)) who told me when things were still very uncertain, to keep a log of his daily events to try to work out solutions from that.
When I did explore back over the notes, about 10 pages worth at this point, I found the point in his stay when we had returned to the hospital the first time. I had increased his feeds and the reason I brought him in was simply because he had been breathing harder. He had never thrown up at home or shown any more signs of refluxing than previously before. We started his feeds back up and he continued to have desaturations of his oxygen, over and over again. We decided to increase his med dose and add 2 more meds as well as change his food. I can remember back then that even after he had been on these meds for about 1 week he was still having desaturations, making docs and us think he wasn't tolerating the feeds. The interesting thing was though that his breathing remained the same and he still hadn't been throwing up like a typical refluxing baby. But as I read my spreadsheet something jumped off the page. All of these changes had been made prior to us getting the sleep study which determined he had sleep apnea and thus explaining the desaturations. Now push forward about a month. He is being treated for his apnea via the oxygen at night and no longer has desaturations. If my theory was correct, then this boy didn't even have that extreme of reflux as we had thought and this may be just a matter of time...for him to grow...develop...and breathe more easy. If that is the case, I feel terrible for all that I have put him through but at the same time these past months have taught me that medicine is all about finding patterns and coming to a consensus by eliminating possible things. We will know in another day whether or not we will even need to go on with the ph probe and maybe the point of this visit was to get off the reflux meds because he may not even need them. I would be very excited to think that was the case but we will see.
But please slap me tomorrow if he completely changes overnight and proves me wrong. He has done it many times before!