Elias did not have any episodes where he stopped breathing overnight and so far today. His last episode was around 6:30p last evening. While this is a great blessing, it also does not provide us with much in the way of answers. Without a real answer, not a it could be this or this or this scenario will only keep our anxiety raised. As for trying to get that answer here is what we are working towards:
- Sleep study – not sure why exactly since all but 1 episode has been while awake, but they think it might give a glimpse towards something to look at.
- Another bronchoscopy
- Pulmonology wants to test a passy muir valve which is a one way valve that attaches to the hub of a tracheostomy tube and allows air to be directed up through the larynx and pharynx enabling speech as air passes through the vocal cords and through the oral and nasal cavities. The hope is the pressure created might help hold the malacia area below the trach tube open. ENT is not optimistic this will work. They believe it will be too much pressure causing Elias to be uncomfortable. We will test and see!
- Neurology is being consulted for potential seizure activity that could cause him to stop breathing.
So there is a plan to start things, but will one of these things provide answers is the one thing the doctors are cautious to say. Depending on the findings from these various assessments maybe they can get a direction if not an out right answer. The bad news to this is the sleep study can not be done until next Friday, September 25th. While we are on the cancellation list and might get to have it sooner they do not want us to go home until that is completed. That is unless we can find something through one of the other methods. So it appears we are in for potentially another longer than desired hospitalization. The even more exasperating point is that we will have to cancel yet another pediatrician appointment. We have been desperately trying to get that accomplished. It is a little on the frustrating side because the pediatrician we are trying to get in with is so difficult to get, but one that is very highly recommended because of his relationship with many of Elias doctors here at CCHMC and his experience with complex kids. We figured it up the other day, Elias has spent an average of 14 days per month in the hospital for his short 16 month life span. We knew we had spent a lot of time in a hospital, but that is just crazy to think about it from that perspective.
As I was writing this update Elias had an EEG done which measures brain function and response. Elias slept through the entire test so it is doubtful they got much and they were up front in telling us that before the testing. They would of course hope for an episode to be able to definitively say anything. We are waiting for the Neurology Team to come back to discuss what they saw. We also got word that they will be doing the MRI while we are here. There are several specialties that need various areas scanned. This will if nothing else keep us from having another appointment outpatient. Well I am going to post this update as it is now 7 hours in the making. It has been very busy here and so far not a whole lot more knowledge. Elias has still not had an episode today, so that is a plus. Will try to update with any news late tonight.