Almost exactly one year ago, I wrote a post in which I described the many health challenges of my nephew. Tonight I write to ask you to pray for him tomorrow, as he undergoes major surgery to stabilize and manage his condition.
The shortest update I can give is this: all the tissue biopsies that Taavi underwent last year came back inconclusive for mitochondrial disease. His mother says that this is apparently not unusual (so little is known about mito that tests often miss it), and that the doctors feel that his symptoms are consistent with mitochondrial complex 1. Further specialized testing and imagery of his digestive tract a month ago revealed that his stomach and small intestine are functioning normally, but that a portion of his large intestine is not. It is stretched out and does not contract as it should to move food through. This is the result of an autonomic dysfunction (caused by the mito), and it is one of the main causes of his feeding intolerance, abdominal pain and distention, and even bladder symptoms.
So tomorrow, doctors will be performing a diverting ileostomy--a procedure that disconnects the small and large intestines and routes the end of the small intestine out through the abdominal wall and into an exterior collection pouch. At this point, the hope is that the procedure may be reversed years down the road, so the surgeon will not be removing the dysfunctional portion of colon. Taavi will also have a central line inserted for IV nutrition as he recovers. We don't know how long he will have the IV for, but the surgeon is hopeful that bypassing the colon will enable food to pass unimpeded through the digestive tract once more, and that, with time, Taavi may finally be able to take in the nutrients and calories he needs, either orally through a combination of oral and tube feeding. Currently he is only able to tolerate about half of the amount that he needs. Rebuilding digestive function will be a slow process, and only God knows at this point whether Taavi will eventually be able to have the surgery reversed and how dependent he will be on feeding tubes in the long run. And the surgery won't--and can't--repair the nerve dysfunction caused by the mito. But we are all hopeful that tomorrow's procedures will greatly improve his health and quality of life. Thank you for your prayers.