Well it has been nine days since the last time Elias stopped breathing so everyone is on guard waiting to see if the potential pattern is true to form. The overall consensus is while it would be preferred not to happen at all, predicting the episode may give us a clue as to what is causing them, especially since it was so random. We have been engaged in many discussions the last few days about a wide range of items pertaining to this. His activity level was of particular interest yesterday. He would be fine and very happy when laying down, but his stamina sitting up or even being held in an upright position was very low. During Physical Therapy she commented how much he was leaning against her. While we expected him to not continue the issues he had been having since Saturday as described in our last update he did, but today is more of what we expected yesterday to be like. So we are off by a day in being able to tell the doctors what we should see next. The doctors seemed intrigued yet hesitant to acknowledge our predictions. We just know Elias that well and I spend 15-18 hours a day with him so you would hope I would be able to anticipate tendencies. We are hoping we are wrong about this one though. If the pattern holds true then sometime this weekend might likely hold the dreaded event. One of the other discussions we have had is regarding the timing in which these all began. One major change did occur a few weeks prior, the discontinuing of ALL the inhaled medications he was taking. At the beginning of December the doctors did not feel like continuing his maintenance doses of Albuterol, Atrovent, & Flovent were truly necessary. The Albuterol is horrible for tracheomalacia as it can actually cause the air way to become more floppy and worsen the condition. The Atrovent was in place because of Elias allergy to robinal, a typical secretion management drug. We are now wondering of the reason for giving him this was not “the right reason”, but it was doing something else for an unknown reason. We can not really explain the discontinuation of the Flovent other than that is mainly a lower airway and lung medication and at that point there did not seem to be much issue in that area requiring medication. During the last two episodes Elias had Atrovent was given shortly after he was breathing again. Realizing that and discussing the timing of all this centered around the absence of the meds there is consideration being given to resuming at least the Atrovent should we see an episode in the coming days. It will be interesting to see how this ends up.
Yesterday, I received a phone response from Cyndi our wonderful outpatient ENT Nurse Practitioner. It pays to develop those relationships with individuals that have a knack for getting things done as they should have the first time. Before leaving for vacation last week she had requested that the pulmonary team place the audiology consult that never happened because the ABR report was inadequate. I left her a message explaining what we had been told about the ABR results. I also wanted to make sure she was aware and in the loop, I know the system too well now. She of course did not and went back to work on it upon returning from her time off. She called and explained that someone should be by to speak with us about this and that after talking with Dr. Rutter they agreed there was now reason to wait for a retest of the ABR. While it is not ideal to place Elias under elective anesthesia it can be justified given the lack of intervention Elias has received. It is critical and we are losing valuable time. His feelings are that while Elias airway is less than ideal, for Elias it has to be considered as stable as much as that thought bothers many of his doctors. In other words they realize that everything can not be placed on hold because of the complexity of the airway. There is not much more than can do to improve it therefore it is a new accepted baseline of stable with extra caution to be used. In rounds today it was suggested that a spot in the O.R. would be available around November 17th or 18th for a repeat sedated ABR. We are awaiting someone from audiology to come by and speak with us to further explain exactly why there is a need to repeat this procedure in regards to the inadequate ABR from June. Persistence and keeping in contact with key individuals is what got us to this successful result. It is a shame though that it takes so much on our part to make things happen. We refused to just accept the answer and kept pushing and asking until finally we achieved the desired result. What happens next remains to be seen, but we promise not to let up if it is unsatisfactory.