The Good and the Bad

The doctors continued to run tests on Dylan. The more they looked at him, the more they found.

He had an atrial septal defect in his heart. This is also referred to as a hole in his heart. They told us that it was a small hole and they would not recommend surgery as it might close up on its own later in life (it didn't).

After they gave him an MRI they told us that he had hydrocephalus. This is also referred to as water on the brain. They told us that it could be nothing, but he would need follow up tests to make sure that the level of hydrocephalus did not increase. For now there was nothing that should be done for it.

The prognosis for his future was just getting worse and worse.

We really needed to get some good news.

We finally started to get some of it.

Dylan's jaundice was going away after a few days under the Bili lights.

Though his kidneys were definitely going to be of great concern to us down the road, at this moment they had enough functionality at about 30-50% of normal that dialysis or a transplant were not immediately necessary.

Dylan was taking in formula well through the feeding tube in his nose and had regained some strength so the doctor's decided to take out the feeding tube and try to bottle feed him to see if he could take to it. It was very slow going for him, but he managed to take in a few ounces at a time.

Based upon his successful eating, the doctors told us that if he could continue to successfully bottle feed we could take him home in a few days.

With this mix of good news and bad news, Melissa and I wanted to know what exactly was wrong with Dylan. What was his diagnosis?

Dr. Roth, the head of pediatrics began researching it, while Melissa and I put on our junior medical investigator hats and went to work on the Internet to find a disease or syndrome that fit in with Dylan's symptoms.

Neither Dr. Roth nor we were able to find something that matched Dylan's issues. Dr. Roth asked for a genetics test of Dylan. Unfortunately, there were no geneticists on staff at the hospital, so we made an appointment to visit the Institute of Basic Research (IBR) with Dylan when he would be discharged for a genetics test.

Finally after nearly a week in the hospital, the doctors told us that despite Dylan's many issues, he was healthy enough to go home. I was ecstatic.

I was finally taking my son home...