I just got an update from Matt. He spoke with the doctor at Brenner's. He is 99% sure that Jonah has a genetic disorder called Epidermolysis Bullosa. He said he sees one case every other year. There are two degrees of this: severe and mild. The doctor said from looking at Jonah's lesions, he guesses he has the severe version. A biopsy will be done (I'm not sure when) to determine his severity level. If this is what he has, it affects three things: his skin, his mucus membranes, and his intestines. The two things that doctors worry about the most are infection (because he doesn't have much of his outer skin to protect him) and intestinal blockage from the sloughing of the intestines (similar to what his skin is doing). At this point, Jonah is on three sets of antibiotics, pain medication, and a sugar water drip. He does not seem to have intestinal blockage at this point. If he were to develop that, he will need surgery.
The doctor has seen kids who grow out of it for the most part as they get older, kids who have died from infection or intestinal blockage in early childhood, or people who have died from the same things in early adulthood. It does not affect his heart, lungs, kidneys, or brain.
The doctor said that this is likely what Gabe died of. He said it would not have been caught in the genetic testing we had done because that only tests for the most common things, and they assumed his skin sloughage was because he had died, not that that could have caused his death. Jonah's prognosis, at this point, depends on the severity of his case, which will be determined by the biopsy they are doing tonight. It will probably be Monday before we get the results.
There is no cure.
I'm getting a six hour pass to get out of Forsyth and go over to Baptist to see him.
I can't explain to you how our lives have turned from elation and happiness to complete heartbreak in a matter of minutes. We are both so low right now. It is so difficult to remain hopeful. This is very serious. Please continue to pray for our strength, that Jonah is the toughest baby ever, and for a miracle. Our God can do all things.
There is a possibility that it could be something else, so we just hope that this is not what it is, and that he has something much less serious.
Please keep praying.