A Single Two Syllable Word

REFLUX! While Elias under went a PH probe study yesterday and over night to determine if reflux was indeed contributing to him aspirating in his lungs, we expected to see him slip a little per the pattern respiratory wise. We did not see this, but we were relying on a machine the size of an MP3 player to let us know what is going on inside. While the surgeon did not have the time to go over in detail the results he did give us the overall result. Elias has reflux and it is much worse than they would have imagined. This is simply because Elias once again proves that standard medicine and clinical course practices are not effective because he does not show the standard clinical symptomology. Classic example was the pneumonia he had when his trach and G-tube surgery took place and nearly cost him his life. His surgeon was very apologetic because he knows that if we had caught this sooner, Elias may not have had the problems he is facing. Again, he was diagnosing based on the clinical evidence which did not suggest the reflux was occurring strongly enough to be an issue, if occurring at all. The results coincide with Pulmonology's theory on why Elias has been having these repeated episodes. Tomorrow we will sit down with his surgeon and discuss the options, which unfortunately will mean another surgery for poor Elias. The most likely will be the fundoplication surgery or "Nissen" as it is referred to commonly. Since the discussion today was brief our understanding was this was a surgery they were not expecting to do while he is inpatient now, but have him come back in a few weeks, which there is a recovery time of 2-7 days depending on Elias progress after and tolerance of feeds as well as if the G-tube needs to be replaced or moved, wouldn't that be ironic!! All of that will be more clear tomorrow, we hope. We are curious though, will Pulmonology would be alright with postponing for another week or two given their opinion that the this is causing Elias' respiratory issues. We of course share that concern on why this would not be done ASAP for fear of another episode as we have been experiencing or worse, pneumonia. We did not push too hard this evening for those answers. We want to give the team a chance to receive the results and develop a plan before we start questioning. So regardless it does mean more hospital time, but it remains to be seen if we will simply continue this one or have to return in the near future. Either option stinks to be honest. There are pros/cons, as well as, risk/rewards for both. Our discussions tomorrow will hopefully make that more clear. However, we at least made a huge amount of progress and even though it was an option we hoped against, at least we have some answers and a possible solution. That at least makes the exhausting schedule we have kept at the hospital worth wild. I think if the surgery is scheduled for later we would be discharged on Friday, but you just never know. We will keep you posted.

We do want to say we are sorry for not keeping up with updates even though we know we do not need to. There are so many of you that follow Elias daily, and we appreciate your thoughts and desire to know how our little man is doing. We also appreciate the well wishes, comments, emails, phone calls, etc. we have received. As always, they are uplifting and provide strength along with a little pick me up to get us through the rough patches. We know there are so many praying and thinking of our son and that he has the grace of God helping him thanks to all of you.