I have tried my best to keep things positive on the blog - and in life, I guess. I don't mean surfacey and fake. I just don't see a reason to be doom and gloom all the time. I genuinely do feel the hope and peace I have described before, but sometimes the reality of the situation sets in. This journey has been very difficult and trying. We have had so many wonderful moments, with a new found ability to focus on the blessings in our lives, but just as often have had dark, sad moments. So, here's your little fair warning for the not-so-positive nature of this post. I'm striving to chronicle this experience - good, bad and ugly.
This stay in the hospital has been very emotional. We were so hopeful for an uneventful procedure to place the gastronomy tube and fundo wrap on his stomach (to prevent vomiting and reflux). And while the procedure itself went very well, our sweet boy has struggled in the breathing department. We knew he was having difficulty swallowing before the procedure, and that was actually a major factor in the decision to go ahead with the port. This difficulty swallowing and clearing his airway has resulted in some fluid and congestion on his lungs. Since Thursday, we have tried chest PT, breathing treatments, diuretics and suction to help him clear the gunk from his lungs. Nothing was helping enough, so today they started BiPAP and a vibrating vest to try to help force air into his lungs and break up the congestion. On top of the respiratory troubles, the little stinker has decided he'd rather not sleep. Really, I think he'd love to sleep, just can't seem to get comfortable enough to stay asleep very long.
Given everything we've been through and dealt with so far, I know this setback doesn't seem like much. It may be extra emotional because now we have a diagnosis. Now we know that many of the problems he has won't get better, they'll only get worse. We have had very difficult conversations with our doctors this time around - talking about things like how his illness will progress, what it will look like at the end and decisions we may have to make when we get to that point. We are so thankful to have had amazing care throughout this process. Our doctors and nurses have truly been a Godsend. They have been candid and honest with us, while being very compassionate and empathetic, and we will be forever grateful for the care they have provided. Nevertheless, the subject matter is something that I prayed I would never have to discuss.
The last couple days have been especially tearful for me. I'm not ready to see him suffer. I'm not ready for one complication after another. We need more time to enjoy our boy and his precious spirit. I have full faith that he will continue to get stronger, his lungs will clear up and his breathing will improve; and it will happen in the perfect time, not my time.