Hydrocephalus

Today we got the results of Nathan’s tests last week, and they confirmed the diagnosis of Hydrocephalus. His head is enlarging too quickly, and there is a cyst in his brain that is increasing in size. The doctor was very concerned and wants us to see a Neurosurgeon tommorrow. She thinks they’ll probably admit him for surgery right away, to place a shunt in his head. My understanding is that the shunt will drain excess fluid away from the brain.

The doctor thinks this might be what was causing Dorje so much pain, that there was probably a lot of pressure from the water against the brain, resulting in severe discomfort. He has continued to cry inconsolably and it’s been over a month of him spending every waking moment screaming in pain. If this is the source of the pain, then we are grateful for the diagnosis, even if it means going through surgery, and we hope it helps him feel better.

They also said he has very severe acid reflux, another source of agony for the baby. The doctor prescribed 2 more medications (so he’s now on Zantac, Prevacid, and Reglan) which she thinks will help him. Also, she referred us to a Pediatric Gastroenterologist to do further testing and to decide how to handle it.

Finally, he has a minor anomaly in his heart..I don’t have the details of that, but she said that a part of his heart that should’ve closed at birth, didn’t. The doctor doesn’t think this will cause complications.

We will post later this week about how his surgery went. As always, we thank all of you for your prayers and ongoing support.

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