Hospitalization Update

Sorry for the lack of updates, we know that everyone is worried and curious how Elias is doing. It has been an exhausting several days with one or both of us there around the clock, with unfortunate necessity rather than parental commitment. I will not get into that right now though. As for Elias, well he is just about back to his baseline, which unfortunately includes the labored breathing, thick and heavy secretions, and of course retching with emecis seeming to become likely any day. He is again off the steroids at this time, but over the last 8 weeks this is where we begin to get back in trouble, so we are closely monitoring his status. He seems to be weaning off the tiny bit of oxygen he has been dependant on to keep his SPO2 (blood-oxygen saturation levels) up. He is moving in the right direction with this, but there is still some inconsistency. They are doing several studies today to try and determine what is causing this and which solutions would best manage this chronic problem. The first study is to place an NJ tube today. You might recall that Elias had this type of feeding tube in the NICU while intubated. This will take the feeds past the stomach in to the jejunum through the nose. This is essentially a test to see if Elias respiratory status and symptoms diminish, vanish, or continue with no change. One theory is that reflux is creating the issue which would then require a Nissen or alternative. One alternative would be a G/J tube. Neither option is one we would, including the doctors, care to visit, but we need to prove or disprove this theory. Secondly a saliva and secretions management study will be done today with Speech Therapy. There is a little confusion at the time of this update which type of study is being executed, so we will have to wait until morning for more specifics. It will include staining his saliva with a blue dye to trace its steps if you will. We will primarily be looking for signs of it being present in the trach. This would more than likely prove aspiration on a daily basis with simple secretion levels adding an increased issue and risk when they are higher in volume. These are the key things they are looking towards to help cultivate a plan. It is unclear how much longer Elias will need to remain hospitalized until after we establish the results of the studies today and determine either a plan or if more studies are needed. Our sentiments on the issue is to invest a few extra days on this hospitalization in order to prevent another one in the near future. Some of the medical staff, outside of our specialist seem to not understand this rationale, but I suppose it goes against the grain of the philosophy of a hospitalization. This being manage and stabilize the patient to move home for future outpatient follow-up and management. In our case, as we have proven in the last 2 weeks with 2 hospitalizations, that is what landed us back in the hospital. His new baseline is not something we or his specialist are willing to accept and realize the critical nature of resolving what has turned out to be a chronic problem that can lead to more serious illness or issue if it continues. We will let you know how things go today. Thank you for all your thoughts, prayers, phone calls and emails.