Monday, September 5, 2011

Post Surgery Catch Up

Surgery has come and gone, and we haven't done a very good job of keeping this blog updated, so here are the last three weeks all at once.

The surgery went long, but well. Our surgeon stated "Eli was a complete gentleman the whole time and did what he was supposed to do." We arrived at CHCC at 5:30am. At the anesthesiologist's suggestion, we gave Eli a small sedative to help with the separation and because it would also cause him to forget the events of the morning. Being a "return customer" and at the age where he will start remembering things, they felt it might be a good idea not to build associations between those hallways and the pains of surgery and recovery. 

The doctor told us "in about 20-30 minutes, he's going to get a little loopy." Eli has a great sense of humor, but we've never seen him this funny. He became a limp rag doll, and started laughing at everything. It wasn't just any laugh, it was that "stoner" laugh. At one point, he slowly raised his pointed finger up to my face and very gently touched my eye. He then smiled, shook his wobbly head and said, "Noooooooo." Then he looked across the room, pointed to the wall and said "snake!" and laughed. Tanya was laughing so hard she was crying. Then Eli would see her and start cracking up himself.

During the 11 hour surgery, we left the hospital to get lunch. We went to Pismo's Grill. We were completely wiped out. Our enthusiastic waiter made the usual small talk and tried to pep us back up. He asked about our hospital admittance bracelets. They're just plain, fluorescent green, so they don't look like anything in particular. "Awesome bracelets, guys! Are those like, special bracelets? Do you get special privileges?" Tanya and I looked at each other, trying to decide how to answer. "They're for the hospital. Our son is in surgery right now." There was a long, awkward moment, and he pretty much left us alone the rest of the meal. :) Poor guy.

We continued to receive our hourly phone calls from the nurse in with Eli. Most people only have one Superior vena cava (SVC). This vein is what this Glenn surgery was all about. It is how all blue blood returns from the upper body back to the heart, so it can be pumped into the lungs to be oxygenated and turned red again. With this Glenn procedure, they detach the SVC from the heart and connect it so it travels directly to the lungs without going through the heart first. Because of this, stopping the heart and putting the patient on the bypass machine is typical. Like some people, Eli actually has two SVCs. This is one of the only breaks he's ever had his entire life. It allowed them to isolate and work on one SVC at a time, while the other maintained full function. Because of this, they never had to stop his heart and he never had to be put on the bypass machine.

We watched him being wheeled between surgery and ICU for recovery about 7:30pm. He looked very surprisingly good! Within another hour, we were able to be in the room with him. Considering what he'd been through, he honestly looked great! He had great, pink color, and everything was stable. He only had a small issue with his heart rate and JET (junctional tachycardia... out of rhythm and accelerated heart rate) for the first night, but nothing they didn't expect and nothing that didn't control itself in very short order. He was extubated after one week, and continued to make good, solid progress the following week. We give the credit to Dr. Adam Holmes. We spoke with him about trends we've seen in Eli over the last two years, especially in regards to fluid retention and extubation difficulties. Because of this, he approached Eli's care very aggressively and pro-actively. Those first two weeks were the best recovery Eli's ever had!

Just as it looked like he might actually go home after two weeks, which would be normal for a Glenn... they found a big pocket of fluid and had to put a chest tube back in. That morning, they collected over 250ml of fluid out of the left side of his chest! This boy can retain fluids like nobody's business, and this is exactly what our concerns were as we entered into this procedure. As I write this, we are at the end of our third week in recovery. Fluids continue to rise, so today, they've added a second chest tube back in. Once again, he immediately dumped more than 200ml of fluid, this time out of the right side.

As I write this, he remains in PICU... just hanging out. He's in good spirits, all things considered. He's so much stronger than we are. He's a role model patient. He's so mellow and easy going. We are able to laugh with him on occasion. The doctors comment on his incredible demeanor. The nurses fight over who gets to care for him. Everyone tells us how cute he is, and everyone who had him during his first surgery can't believe how big he's gotten. He's such a shining light in so many peoples' lives.

We'll write more, and share some pictures of these last weeks. Thank you for your patience as we find time to do so.