A "Growing" Problem

One of the signature behaviors of cystic hygroma is that it can grow at any time, at almost any speed, and without any warning. We learned that lesson when Crewe was five days old and again when he turned six weeks old. Now, at almost nine months old, we are reminded again of how quickly things can grow.

Over the past ten days, Crewe's upper lip and right cheek have puffed up significantly. Crewe's neck also seems bigger as it now covers his trach tube when he sits. The "bleebs" in his mouth are also bigger and have turned white. New ones are appearing almost daily. The increases in swelling has made breathing and eating more difficult. Solids in particular are a challenge and often come back up when he coughs in an effort to breathe.

While Crewe was at PCH last week for a regularly scheduled ultrasound, I asked the interventional radiologists to stop by to take a look. They could not believe how much his face had grown in just six weeks and immediately scheduled him for an MRI to see if there were areas they could reach through sclerotherapy to help alleviate some of his breathing and swallowing issues.

The MRI was today and we are hoping that the scan will reveal some clues. The doctors are going to conference after they can read the scan and recommend a plan.