Late morning yesterday Rowan’s breathing tube was removed and he’s completely breathing on his own. Save for three monitoring sensors adhered to him and a nasal tube for feeding and medication, he’s completely free of the all the medical apparatuses that made us feel so fearful and powerless a week ago. This has led to two major developments: he’s been upgraded from his giraffe bed/radiant warmer setup to an open crib, and his Mom and Dad are invited to hold him in a bedside chair anytime they want (which, as you may expect, is very often).
Yesterday’s meeting with the medical team went very well. Initial results from the MRI are back and we talked through the findings. The neurologists can see evidence of injury to the middle of his brain on both sides, which they seemed to find surprising. It’s not altogether an uncommon injury, but it “doesn’t match the birth story”— it’s very rare to see something like that when labour and delivery went as smoothly as they did. This injury would not be a result of the seizures, but may provide a better clue to what’s causing them, likely a metabolic disorder or a lack of oxygen to those parts of the brain at some point in his development. Either way, it gives his team more avenues to chase down to solve this medical mystery. In terms of any lasting results from the injury there’s no way to tell anything this early (as in, could be months or years, and will just depend on when and if he meets different developmental milestones), but the medical team seemed very impressed with his progress in just the last week. There’s really no baseline for this; it could be significant delays or limitations or it could literally be nothing. Based on the location of the injury we’re told that future potential developmental delays would be more likely to affect motor function than cognitive abilities, but there’s just no way of being sure of anything like that right now.
Yesterday’s meeting included terms like “outpatient” and “follow-up appointments.” No timeline yet for a return home, but they’re extremely encouraging—overwhelming, really—words to hear.
