Today we brought up something to the doctors that was not so much a concern as it was an attempt to increase awareness of a potential pattern that we have been noticing. We were also questioning why this would occur and if it would be something we simply needed to accept and learn to manage or is there a proactive solution?
For the last three days Elias has been exhibiting a behavior that we are becoming all to familiar with. It begins with the HME or PMV causing issues followed by a heavy cough with the appearance that he is attempting to clear secretions from the trach tube. This is quickly followed by the “I’m gonna throw up” face and depending on the time of day or episode he actually does. It is usually mucus and it seems like he is overwhelmed by the secretions, but there isn’t really much there. These days also carry with them lower stamina, more naps, and Elias being generally lethargic. Have you ever coughed so hard and so much you gag? Well that is about the best way to describe what is going on with Elias. We are beginning to notice this as a cyclic behavior that possible could be part of the Apnea episode pattern. Looking back at the calendar since these episodes began they seem to occur about every 9-12 days. Today is the 7th day since the last time Elias stopped breathing. If we are correct in identifying this pattern that would put us at having another episode anytime from Wednesday to Sunday. Hopefully, we are wrong, but the issues he is having now seems to happen 3-5 days before hand, stops then 2-3 days later he stops breathing. I was close in predicting the last one. I had told the fellow the Thursday before it happened based on what he was doing that day I would not be surprised to see him have an episode the next day. It did not happen of course, but it did happen 4 days later. If we are correct though it might be something that could give us direction to help prevent future episodes.
Unfortunately, it seems like every time we bring anything up like this the short quick answer always seems to be he needs more time on the ventilator. Our response to that is how do we know that for sure? The doctors, for the most part, constantly remind us that they do not understand how Elias does as well as he does. The picture on the inside does not match the outside result. However, they point to the clinical numbers when we express a concern about things saying things are fine or not showing an issue. Then tell us that he must need more support which is another way of saying more time on the ventilator. If you can not explain his behavior and clinical numbers off the vent, when you know there is an issue, then how can you trust those same clinical numbers to accurately reflect when there is an issue?
So this afternoon they did a chest x-ray and another trach culture. Based on whatever they find they will make some decisions tomorrow and try to create a more organized plan. Hopefully it does not include putting him on the Ventilator more during the day.