Momentum Shift

Today Mitchell had an appointment with his orthopedist. Frankly, we hadn't had a visit with him since our first 6 months ago. It was at that initial appointment that the doctor told us "the reason for his issues are due to 3 codes (lack of oxygen) when he came out of surgery" and "clearly you have bigger neurological issues to worry about than his torticollis or curved spine." I don't break down often, but his manner and blunt words caused me to heave heavy sobs as soon as he left the exam room. We've worried about getting to the bottom of those codes ever since. We were never told about them, though we knew Mitchell had difficulty coming out of anesthesia following his cardio-thoracic surgery.

Dreading today's appointment, the experience couldn't have been more unexpected. First, the doctor completely remembered Mitchell and me. He searched around the electronic records, looked at me, then apologized for his telling us about codes. For the first time I saw the file in which they were referenced. It was a misrepresentation from my own account of Mitchell's oxygen desaturation spells prior to his surgery. A doctor apologizing...amazing. Then he watched Mitchell and looked up saying to me, "He's really improved hasn't he?" More shock. He went on to notice how Mitchell seems better neurologically and physically, using his body more and interacting with the world around him. He even balked at our inquiry about wheelchair preference, saying it's too early for one. "Let's see what he does on his own." Bottom line, we know Mitchell is no where near where he should be at 14 months, yet we don't typically get any sense of hope or optimism from the doctors and today we did. And, from the most callous doctor Mitchell sees! We're calling that a shift in momentum. It really lifted our spirits!

By the way, we've had pulmonary and cardiac doctors check out Mitchell's lungs and heart with clear reports. He has breath holding spells and oxygen levels get to the 70-range, which means it looks a lot scarier than it is. He'd have to get down below 40 for alarm. He'll turn a little purple around the mouth during one of these episodes and all you need to do is blow a little on his face and he'll breathe. Even so, we're checking into Children's Hospital on Sunday for an overnight sleep study to make sure sleep apnea is not occurring.

At this point, we feel feeding is our primary concern. We rescheduled the appointment with the feeding team at Children's Hospital because in preparation for the meeting by phone with their nurse, we determined they did not have enough information regarding Mitchell. We now are scheduled to see the group on June 10 and by then we'll have results from the FEES test to see his swallowing via a camera put down his nose. Following the feeding team appointment, we're pretty sure we'll have to sedate Mitchell and have an endoscopy performed to really check out what's going on in his esophagus.

I also found out I was a little misled into thinking that Mitchell's doctor visits would be consolidated. But I'm getting smarter about asking questions up front to make sure each visit is productive and we're still preparing agendas for each appointment which is helping. Oh well...could the playing field be changing? We are hopeful. We dream of Mitchell walking into doctor's offices and saying "hi".

Thanks to everyone who shares in Mitchell's "inchstones" and of course, big brother's "milestones"!