stories from the stenavich family: Progress Report

Lucas has come to a bit of a plateau in his progress. The amount of chest fluid output has been fairly consistent in the last couple weeks regardless of feeds or not. In an attempt to make some positive steps forward, Adam and I opted to start Lucas on a bit of an experimental medication to see if it could help. The risks are low and this is the least invasive option available right now. The doctors have come across some pediatric studies that have shown success with lymphatic issues using sildenafil (or as we know it, viagra). Apparently the drug was first used on babies to treat pulmonary hypertension and then later found to have the side effect we're most familiar with (for those of you wondering, no, babies don't have this same side effect)!

To make the most of the oral medication, Lucas also gets a small amount of food to keep things moving in his gut and to better digest the medicine. After more than a week on only IV nutrition, I was happy to hear he was finally going to get to eat again even if only minuscule amounts. Because of his chylothorax and his inability to digest certain types of fat, I've actually been working with the neonatal doctors, NICU dietitian and head lactation consultant to come up with a way to skim my milk. He seems to be taking it well in the small doses he's allowed and has even started pooping again, yay!

He continues to have increased edema each day and that causes his vent settings to go up. Until his body is able to better mobilize the extra water weight, they can no longer consider extubation. His lungs are capable, but the edema adds extra weight on top of his chest making breathing more difficult. The doctors continue to wean his morphine, but unfortunately his face is swollen he can't open his eyes so we're not entirely sure how often he is awake and alert. It's extremely hard for me to see him looking like this and I hope the swelling goes down soon.

Hadley asks to see pictures of her brother every day and I've been wanting to get her up to the hospital for a while. She's been showing some signs of stress and regression and I thought it might help her to see him. My mom brought both girls up at lunch time one day this week and Hadley was quick to sit at Lucas' beside and hold his hand. She had no fear about the cords and only asked about his vent tube. She seemed satisfied with my explanation and then sat down in the chair next to his bed and read stories. She wanted to touch and kiss on him as much as she could. Maggie just pointed and kept saying "baby" over and over again. She even got a little curious and lifted up his blanket to check out his legs! In other good news, I've been able to hold him a few more times which is always a special time.