On Monday, Mitchell cried the entire time in the waiting lobby at his neurologist's office at Children's Hospital. He cried as his weight, length and head circumference was measured. He cried as the nurse asked us the obligatory questions once in the examination room. Then once he and I were alone in the room waiting for the doc, he fell asleep. It was so nice to hold him while he peacefully slept even though I had been praying that he bring on a full on crying/breath holding/pain episode while we were there so the doc could really see what's going on.
The doc came in and we chatted. I tried to arouse Mitchie several times moving his position around. I don't recall the last time he snoozed while on the go that deeply! Errr!
Then it happened. A full on outburst as he awoke. The doc looked him over during the painful cries and seemed alarmed. He said in his serious tone, "Well now this is unmanageable." Tell me about it!
He also stated that this type of behavior is inconsistent with his Mito patients and that it clearly seems GI related. I was pretty straight with him saying that I was to see our GI the very next day for a follow up, but already know that he'll in turn say it's neurological and we'll continue on our goose chase. He committed to personally contacting the GI to discuss Mitchell's situation.
We did set a course for some additional tests. He says clearly there has to be something causing Mitchell's discomfort. We were sent off to come back in 2 months after a kidney ultrasound (possible kidney stone?), urine analysis and even a 24 hour or more hospital stay to watch his behavior and perform a round the clock EEG looking for seizures (-I've already done one of those with M for only 8 hours and it was no picnic!) I realized after I left that I no longer was sure whether Mitchell should be characterized with a probable mitochondrial disorder. Are we back to square one? I should have asked.
Fast forward to the Tuesday. We go see the GI. His office had left a message the previous Friday saying they had scheduled M's feeding tube surgery for Thursday, July 23. "If it's not then, you'll have to wait until September." Well, the 23rd happens to be one of the worst days possible for me as I have a pretty large conference I've been planning at work on that day. Of course M comes first, but I had to honor the work commitment. At the visit, we agreed to wait until September to do the surgery. While aspiration has been confirmed, he's drinking a little more and gained some weight. But we're told it's still the right thing to do.
Furthermore, the neurologist hadn't yet reached out to him. And as suspected, the GI said these outbursts are not GI related. He thought a hospital stay may also benefit Mitchell's situation and agreed that something must be causing the crying. By the way, both docs also agree that the feeding tube is needed, but won't solve his issues.
We are very comfortable with both of these doctors. They are very caring. Their administrative nurses have been the best we've come across. What we have to acknowledge is as good as they are, they just don't know everything. M's is not a clear cut case. Never has been. All we want is for him to be as comfortable and happy as possible and for his health situation fit reasonably well into our family life. We'll see what happens.
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