Productive Meeting & Elias Troubled Breathing

Yesterday turned into a much longer day than intended. First off, Elias is still having some difficulty with his breathing. He is laboring and wheezing and very congested with thick pluggy secretions from his trach and in his lungs. The pulmonologist (lung specialist) seems certain that Elias has some sort of upper respiratory viral infection. They sent some other cultures off yesterday evening, but it will be tomorrow afternoon for preliminary growth results. It is possible that they will not actually find the virus since there are so many that you can not possibly test for them all. They are aggressively treating him with a course of asthma treatments (albuterol & Flovent) at the closest intervals possible. They are also giving him oral steroids once a day for the next several days to help reduce inflammation in his lungs, and move the secretions. This is not a particularly serious problem for Elias, unless it were to go untreated. With his trach, he is certainly at a much higher risk for more intense effects with common colds, flu, and other respiratory illness. Obviously, if they would have listened to us 1 & 1/2 weeks ago, we would probably not be where we are today, but it is a manageable scenario without a lot of risk. To put it in perspective, think of how we feel when we are at the peak of a bronchial infection (bronchitis). We struggle to breathe, feel miserable, and can feel the secretions in our chest and lungs causing discomfort. That is about what Elias is going through and how he is feeling. Tomorrow they will reassess his condition. He should fully recover by the end of the weekend.

Now, I'm sure everyone is asking, "so what does this do to Elias' discharge date?" It is difficult to say for 100% that this will change the date; tomorrow will be the deciding factor. However, during our meeting we discussed discharge and home care much more in-depth. Unfortunately, as of yesterday afternoon, our Medical Assistance (MA) number had still not posted online. So even if it were to post this morning, it is unlikely we would be able to coordinate the private nursing process and home medical equipment by the weekend. So this obviously puts a bit of a snag in the plan, which we expected. It was funny, because as the case manager was explaining the scenarios, I noticed the Social worker's face looking disappointed and concerned. As she leaned in towards us, I looked over at her and said, "It's OK Erin. We knew better than to have our hearts set on October 7th." She looked relieved to hear us say that. Even before all of this we felt that the original date was too ambitious, but we maintained a level of cautious optimism. The case manager would ideally like to have us discharge on a Tuesday, so in her world October 14th would be the next target date. The doctors are pushing for Thursday the 9th. We will keep everyone posted on this wonderful saga, as I'm sure it will fluctuate daily over the next couple of days.

Elias will go home on both the Flovent and Albuterol. We will also be taught secretion management and chest PT to help with the process. They described in detail how busy we will be with Elias and appointments once home. He will need a lot of care management with shorter interval follow-ups. They have several programs that will try to help manage the interdisciplinary scheduling of these appointments together so we do not have to make multiple trips per week. The thing that really hit us a little off guard was the discussion of trying to prevent frequent future hospitalizations. The Pulmonologist is treating and diagnosing Elias with chronic lung disease. Now, this sounds much worse than it is in reality, particularly because the majority of individuals with this diagnosis are oxygen dependant to some degree, and Elias in not. We will not even have oxygen on hand at home because using that can mask a problem and cause it to manifest into something more difficult. If there is a need for oxygen, then it is an emergency situation that requires 911 or other medical intervention. That makes sense! But with the chronic lung disease diagnosis, certain precautions are in place and, as mentioned before, risks increase with simple colds and flu that can create the need to be hospitalized. After 5 months in the hospital already, and with cold and flu season rapidly upon us, it was slightly discouraging to hear, but a reality we need to prepare for mentally now. Everyone obviously plans to work to prevent this, but it is unavoidable at times, even when you are most cautious. There is certainly a lot for us to absorb, become accustomed to, and manage. We are already starting to get the organizational aspect of managing his cares, medications, appointments, and therapies. Hopefully, the transition will be fluid with only minor adjustments needed once we are home. Thank you all for your continued support, thoughts and prayers.