Up and down, up and down

We just can't seem to get off this roller coaster of our lives.  You know that anticipatory, excited feeling you get when you are creeping slowly up a steep hill on a roller coaster?  It's almost a giddy feeling where you are nervous about the downward slope, but can't wait for it at the same time.  Well, I'd say our "ups" are the exact opposite of that:  we are happy and giddy, yet terrified and anxious about the next "downward slope."  It's not a peaceful feeling and I made a vow just this last week (thus the "Acceptance" post) to live more in the moment and not be so afraid of things that might happen...

Luke has been having issues swallowing off and on for the last several months, but the issues grew a bit more severe over the last month.  Until now, we all thought it was likely related to his breathing issues that would hopefully diminish once we could get his adenoids removed.  He also developed thrush a couple of times from the steroid injections, so we thought that was playing a part as well.  Thankfully, his GI doctor made the decision that we needed to do an upper GI test and a video swallow study (where they watch where the liquid goes as he swallows) to rule out aspiration into the lungs.  Usually aspiration leads to pneumonia, which he hasn't had, so we were not expecting the news that he is in fact aspirating even thickened liquids.  So, according to the doctors, this is either a new development or he just got "lucky" and was able to fight off any pneumonia thus far.  He was admitted on Monday to have an NG tube put in (tube that goes through the nose and into the stomach) for all feedings.  We had to learn how to put the tube in, how to feed him through the tube, etc.  Most of the doctors think this is related to his neurological disorders, so they will do a repeat MRI of the brain next week.  It could also be a structural issue, so the ENT doctor will go in with a scope to do what's called a bronchoscopy.  Based on the results of the further testing, a decision will be made as to whether or not this could be a long-term issue, in which case he will have surgery to put in a more permanent G-tube in the stomach for feedings.

Luke continues to be such a trooper through all of this, but he is quite a determined little guy and loves to pull the tube out completely (which is why a G-tube is even more likely) no matter how well we try and tape it up.  He is all laughs and smiles when he gets it out and then proceeds to play with it!  Getting the tube back in, however, is another story...not fun at all.  The amazing part is that, aside from the task of putting the tube back in, he remains his happy, laid-back self.  He truly is remarkable, but I think it's about time he can get off of this up and down, up and down roller coaster that has been his life for 10 months straight.