Weekend Wrap-Up

It's been a long weekend. On Friday, D and I celebrated the tenth anniversary of the day we started dating....we went out to a nice Italian restaurant in downtown Encinitas. It was a nice evening, but we definitely hope that the next ten years are more like our first nine than the last one. It's been a rough year.

On Saturday and Sunday, all of Andrew's local grandparents came down to visit him one more time before the NICU closes to visitors for the winter. The visit was obviously bittersweet...any chance to see him is a good one, but the next six months will be difficult for all of us. We were glad to have everyone down, but now we're exhausted heading in to another busy week.

Andrew has been displaying some interesting behavior this weekend. During the day, he ran a fever, didn't sleep much, had some episodes that required extra oxygen/Ativan/Fentanyl, and was generally grumpy most of the time. At night, his fever disappeared, he didn't require much (if any) Motrin/Tylenol/Ativan, and slept peacefully....he even got a much-needed sponge bath. We're still trying to figure out if this is one of his quirks, or if there's a simple solution to perhaps a simple problem.

The surgery is still scheduled for Tuesday. If you count any time a surgeon cut him open to perform an internal procedure, this will be his fifth surgery:

1. ECMO Cannulation: Putting him on ECMO required the surgeon to open the right side of his throat, sever a major artery and vein, and insert special tubes (cannulae) to provide oxygenated blood to his heart.
2. Hernia Repair: For this surgery, his abdomen was opened, his intestines (and stomach, and part of his liver) were pulled from his chest cavity down into his abdominal cavity, and a Gore-Tex patch was sewn in place of his missing left diaphragm.
3. ECMO Decannulation: Removing him from ECMO required another surgery (the same day as his hernia repair) to remove the cannulae, tie the artery and vein on both ends, and sew up his neck.
4. Ladd's Procedure: After a blockage in his digestive tract prevented any food from being processed correctly, the surgeon opened his abdomen, removed the tissues (Ladd's bands) that were pinching his small intestine closed, and repositioned his abdominal organs in a less troublesome configuration. This includes small intestines on his right, large intestines on his left, and removal of his appendix. They also put in a gastrostomy tube (through his belly and into his stomach) while they had him open.
5. Nissen Fundoplication: In Tuesday's procedure, they will dissect his stomach away from everything else (liver, abdomen wall, etc) then wrap (plicate) the upper stomach (fundus) around the esophagus, then attach it to itself. This will cause a corkscrew-shaped bend in his upper stomach, preventing food from refluxing back up his esophagus and (hopefully) allowing them to increase his feedings to their full levels.

Any questions? I used a lot of jargon in my summary, and I'd be happy to clarify anything that didn't make sense.