Unexpected, Unwelcome News

The hospital called this morning to schedule a time for us to sit down and talk with the doctors about Truman's case. We thought the conference was going to be about how to address Truman's intestinal issues. It was instead about a follow-up brain sonogram that was performed yesterday.

Sometime during the last week, Truman suffered an intraventricular hemorrhage, or brain bleed. His prior results had indicated that he suffered only a grade I bleed on the left side of his brain and no bleed on the right. Now, the right ventricle is larger, or "more prominent" in medical speak. Although they cannot see any blood on the right, the size of the ventricle indicates a grade III bleed or at least pressure on his brain to that degree. The news on the left ventricle is worse still. Blood was detected in the actual brain tissue. Although it appears to be a relatively small bleed, it is classified as a grade IV. Because it is in the tissue of the brain, we know that some brain damage has occurred. What cannot be detected with the sonograms is how deep the bleed is.

We have no idea what to expect long-term. As our previous posts have indicated, brain bleeds classified as grade III or IV are considered severe. The doctor told us that because it was a small bleed, there is a chance that it could result in relatively little impact on his life. However, grade III and IV bleeds can also mean serious brain damage. We do not know what to expect at this point. We simply have to wait to know the extent of what happened to Truman's brain, perhaps years. A follow-up brain sonogram will be performed in a week. At some point after that, a MRI will be performed to see if they can determine how deep the bleeding in his brain is and therefore offer more information about what to expect in terms of his future.

As for the intestinal issues, it's been determined that Truman has sepsis, a type of blood infection. The doctors are not sure if that is part of the cause of his inability to pass meconium or perhaps a symptom. Today's bowel xrays also show that the distention in his intestine has move downward somewhat, which means that the "blockage" appears to be moving. Perhaps it is not a complete blockage after all. Right now, due to the infection and the movement in his bowel, they are holding off on any bowel surgery. The current plan is daily xrays for the next five days to monitor any additional movement of the obstruction and to make sure the infection has completely cleared before doing anything that could introduce further infection. This also means that it will be at least another 6 days before he starts receiving milk, possibly longer.

A little more than two weeks ago, we felt extreme joy when we learned that Truman's brain bleed was very minor, the kind that would resolve itself. We had been told that about 90 percent of brain bleeds occur in the first three days of life. We thought we were completely out of the woods, and were not concerned about the remaining 10 percent chance. As often as Truman has overcome the odds to this point, it now appears that the odds have caught up to him. It is very hard to be hopeful at this point.

--Ben & Kara