We were still reeling from the revelation that Julie didn’t have a CCAM but a tumor. When a lobe of the lung doesn’t develop properly during gestation and becomes a useless tissue that doesn’t perform the function of the lung, doctors call the tissue a CCAM. Since each human lung consist of three lobes (for a total of six) losing one lobe isn’t usually a problem after infancy. The body bypasses and absorbs most CCAMs. Sometimes, the tissue becomes a problem. In these cases, a surgeon removes the tissue. Removal can occur soon after birth, but most doctors prefer to wait until the child is two or three and can handle the surgery better.
A tumor, on the other hand, causes more problems because the errant tissue grows unchecked which effects other structures. Julie’s tumor grew quickly next to the heart and filled the part of the chest where the right lung developed. The tumor squeezed both the heart and the lung causing most of Julie’s problems.
Our joy exploded as we realized that the main issue causing Julie’s problems had been identified and resolved.
Here’s the update for Sunday (which I didn’t get published until Monday)…
Julie was stable yesterday. The hospital staff continues reducing the settings on her breathing machine.
She has lost a little fluid and her face looks great with much more definition than before the surgery. The swelling in her head appears to be less than before, too. Unfortunately, her weight is still rather high at 5 lbs 10 oz.
She is starting to come out of the anesthesia. When Sarah and I visited, she was a little more active and held my finger for a couple minutes. She also pushed against Sarah’s hand with her foot.
Julie began eating again starting at 5 cc every 4 hours.
Thanks for all your prayers.
Andy and Sarah Horn
Now we faced a new set of problems. First, Julie still had some swelling from extra fluid in her chest and head. Second, the surgery took its toll on her system and caused Julie to start from the beginning again. She went back to the most aggressive breathing machine which limits her movement. Her feeding restarted from that of a newborn. So, while we wanted to reduce her weight from fluid, we needed to add weight due to growth and development.
Pain management became another problem given that the surgery required the opening of her rib cage (so-called open heart procedure). The surgeon had to be more aggressive with sutures than he would have preferred.
Still, we couldn’t contain our excitement that Julie would fully recover and might come home soon.