Today was another productive and eventful day. It was an argument between nurses and doctors over Cohen's oxygen or room-air flow. Upon entering his room this morning we were advised that he was now going to receive 2 liters of flow continuously to help prop open his airway to treat his sleep apnea. The talk around the hospital today was whether or not he needs the actual oxygen or just needs the airflow to keep open his airway.
The sleep doctor, who reminds me of who Mr. Sandman from the song would look like if you could visualize him (thick dark beard, soft spoken, and wears a bow-tie) came to pay us another visit. He felt very strongly that Cohen only needed the flow because he has never needed the actual oxygen to bring him out of an apneic spell. With this being said, the only problem is that the nurses protocol did not allow them to use only room air because that is something that can not technically be managed at home. The current machines tend to be very large and do not travel easily, though he did say that they have since come out with a machine in New Zealand that will be available in March. Cohen could be one of the first to possibly use it! Through the day he seemed to be so much more peaceful. His respiratory rate was the lowest I had ever seen and he was not breathing as noisily. It just could be that all the little guy needed was a little more flow moving into him, but I wasn't completely convinced.
They were able to override the usual protocol for this floor and kept him on the room air for the remainder of the day. We also were able to increase his feeds to 25ml/hour to allow us for more breaks at home.
Meanwhile the new idea on the table currently was whether or not we should have another look inside his airway one more time prior to being discharged just to make sure we are not missing ANYTHING! They will be performing another bronchoscopy but this time the pulminology team will be performing the procedure with a more flexible scope to really go down deep and look at the anatomy of Cohen's airway and lungs. It is possible they could find nothing but also very possible they could find something that is causing all of this drama with his breathing. They will also be performing a CT lung scan to monitor how his lungs are filtrating the oxygen. On top of that they want to extract any liquids from the lungs and send them off to the lab to check acid levels to finally determine whether or not Cohen has aspirated in the past. All of this will be done hopefully in the realm of a few hours under anesthesia and hopefully we will walk away with more answers after putting our little guy through more procedures.
As much as I am worried to agree to have him go under anesthesia again, at the same time there has always been a big part of me that thinks we have been missing something, that the doctors were missing something and just treating symptoms that have continued to return. He seemed to have reflux so we treated it with medicine and he improved. But we have never been able to calm down his breathing or determine why he does better on his tummy or sleeping on his side. When Cohen received his last bronchoscopy, the ENT surgeons not finding anything was exciting, but also a let down. We thought we were going to walk away with answers and reasons to why he breathed the way he did, but we didn't. Throughout this entire process doctors have been convinced and sometimes had us convinced that they were about to find "the answer." But every time, there was no answer. There has been no light at the end of the tunnel on each of our discharges and I've known deep down that we were not bringing back a completely "figured out" little man. I'm excited about tomorrow and what they may find and hopefully it won't be anything that we are not equipped to handle. I'm also excited that we may finally get peace of mind that there really isn't anything else we are missing and we can sleep soundly at home hopefully for good!
Please keep positive vibes or prayers (whichever you prefer) flying our way tomorrow throughout the day. We are not sure when the procedures will take place but will try to keep everyone updated as much as possible.