New normal of life with the Bif

This post is overdue...we had our first SB related scare. Thomas was having some stridor (high pitched wheezing when inhaling) that randomly started and then got worse over the course of a couple of days. I had remembered reading about stridor and how it can be linked to something common with spina bifida, so of course we googled it...how have we not learned to stop googling health related topics at this point??!! A call to the MM clinic and our pediatrician got us an appointment locally which was immediately followed by a trip to Cincy Children's ER. Our local ped didn't want to take any chances with his shunt.  We got down there and got right in a room, everyone we saw heard the stridor - which was a weird kind of relief, I wanted to be sent home b/c we were worrying over nothing, but I also wanted validation that we did the right thing by acting on it and coming to the hospital! We were sent for a CT scan to look at his airway and the ER Doc didn't seem concerned with what the imaging showed, she was thinking it was probably tracheomalacia, which is basically an exaggerated narrowing of the airway on inhalation, it can be caused by any number of things and is relatively common, but just to be sure they wanted us to be seen by the Ear, Nose and Throat docs. So they came in and scoped our little guy, they put a tube up his nose and then threaded it down his throat to see what was happening when we heard the sounds. I really wanted to look into the scope to see and I must have been making a weird face and stepping closer because they kept saying how it wasn't hurting him and how it was good that he was crying so they could see the whole situation - trying to reassure what they must have perceived to be a concerned mom. I wanted to correct them and say that I wasn't concerned about them hurting him and I wasn't nervous about his crying, I just want to play with your scope and see what it looks like in there, but I decided against it since it made me sound like an unsympathetic mom, so I just nodded and tried to look relieved that they weren't hurting him. They also didn't see anything of too much concern. With Thomas' Chiari Malformation (basically his brainstem pulled down into the spinal cord) sometimes it can put pressure on the vocal chords, paralyzing them and not allowing them to spread apart, causing stridor. If this were the case, we would be looking at a decompression surgery possibly. Obviously another surgery on this poor little man is not ideal especially a complicated one like a decompression surgery. But they didn't think they saw that, although the vocal chords did freeze up when the stridor was happening, they moved correctly when he was crying normally. This was good news and they thought that the stridor and intermittent spasiming of the vocal chords could be due to reflux, so they were planning on sending us home with reflux medicine after they checked in with the attending doc. Sometime later the ER doc comes back in and said they are going to admit us for the night. This came as a pretty big surprise since we were packing up to go home based on the last doctors that had been in our room. Apparently someone up the chain of command wasn't comfortable with an educated guess about reflux and wanted more tests run to make sure it wasn't a silent shunt failure or symptomatic Chiari. So we had another CT scan done of his whole shunt this time (shunt series imaging) and we were put on the schedule for an MRI in the morning. Usually they sedate the kids that can't be distracted by movies or music, but we were able to try it without sedation and I just fed him and swaddled up tight and hoped for the best. He will have enough done to him in his life that the less anesthesia and stuff like that we can do the better. He did great with the MRI and the images came back stable and no signs of shunt failure or pressure from the Chiari. On that note they sent us home with the offer to stay another night if we wanted him to be observed overnight....ummmm thanks but no thanks, we went home! Home with no real answers but also no concerns, so we'll take it, for now. This is what we are to expect when there is a slight health blip with our little Tom Tom, we need to rule out all the big stuff and be happy when it is just something normal like a cold or fever or fussiness. We will always have bags packed when heading to the hospital and also always have phone chargers with us (I may have had to borrow the nurse's phone charger so I could get through the night with a working phone....). Also as he gets older we will always have books, snacks and stuff to do. Lesson learned and new normal still taking shape!