Today was a great day to be in the city. I ran back and forth from the medical building to the parking lot to add more money to the meter, as the doctor’s appointment got longer and longer. A “quick” consult with the ENT surgeon led to seeing yet another specialist at Jefferson hospital in Philly. The first doctor didn’t like what he saw in the subglottic region of Matthew’s windpipe. The second doctor videotaped his way down Matthew’s throat and explained what we were looking at:
See here and here? Those are your vocal chords. They are supposed to be white, not bright red like that. Down beyond this area is where you are having swelling, and which makes it hard for you to breathe. It was fascinating. Like our friend (who is a speech-language pathologist) described his vocal chords, they looked like a butterfly flapping its wings… except this butterfly shouldn’t be red. The real problem lies just under the voice box, and we discussed what our next step needs to be. As the Wegener’s runs its course, it acts somewhat like a roller-coaster: flaring up and then getting back under control. We are hopeful to be on the downward slope right now.
As long as things don’t flare way back up, he is scheduled for a bronchoscopy in four weeks in order to closely examine the extent of the subglottic stenosis and to perform a balloon dilation of his stenotic area. Basically, opening up his airway ever so little and hoping this small dilation will remain open… then doing it again a few weeks later if his body handles it well. He explained it as a two steps forward and one step back operation. He will also be seeing an otologist about his ears… which have some problems again.
As crazy as it is to keep all the doctors in order, we are so incredibly thankful to have access to these remarkable specialists. We are thankful his eye tubes have still held up and look good a couple of years after that surgery. We are thankful for people who have joyfully watched our children so we can go to all these appointments and for kids who come home and report having “the best day ever!” We are thankful for being forced to slow down and recognize what is truly important. It isn’t our car, our house, our clothes, or our status. It is our breath, our relationships, our time and how we use it. We know we belong to the God of the universe, the God who sees. We don’t know when our last breath will be, but we know when it ends on this earth, our life truly begins. Until that day, we want every moment to count.