Gabby's Medical Journey Part 2

Gabby had her corrective surgery for her tetralogy of Fallot (ToF) on 1/5/06. Sending her off to surgery was one of the hardest things I've had to do, but I knew that she needed the surgery in order to live. The wait seemed to take forever. There was another family there that was waiting for their son to go in for his corrective heart surgery. They had the same surgeon. They told us that the case before theirs was taking longer than expected. Our comment to them was, "That's our kid that's the first case." This was not a great feeling. Finally the doctor came out of surgery. He took us into a conference room to discuss what was done. I don't remember the conversation in all of its detail, but parts of it really stick out in my mind. He went over what he'd done in surgery. I asked whether or not he was able to save her pulmonary valve, which is the valve that's between the right ventricle and the artery going to the lungs. His comment was, "Oh, I destroyed that." Jack never forgot that comment and how he seemed to just take it as part of doing the surgery. He told us that when they were measuring her outflow tract, the 2 surgeons looked at each other across the table and asked each other how she was doing so well with the defect she had. The tract is supposed to measure 10 mm, and hers measured all of 2 to 3 mm. He also told us that "She's going to get sicker in the next 12 to 24 hours. I don't know how sick she's going to get, but she's going to get sicker." He then went over some of the tools that they had when this happened. His words turned out to be horribly prophetic.

After they got Gabby back to her room in the ICU and settled in, we were finally allowed to go in and see her. She was so swollen, I almost passed out. It was tough to see. I remember her nurse apologizing for her IV lines being such a mess, "but we've had more important things to worry about," she said. To which I replied, "Like what?" She answered, "We're having a hard time controlling her blood pressure." (To any parent whose child is going through this, if a nurse says this to you, stick around!) It had been a long day, it didn't seem like we could do much there, and Jack had to get Sarah out of daycare before they closed. We decided to head home in our respective vehicles. We told them where we were headed. In hindsight, I wish I'd stayed close, but no long term damage was done.

A quick diversion: At the time, we were living in the town of Redmond. For those who aren't familiar with the Seattle area, Redmond is located at the other end of a freeway that starts in Seattle called Hwy 520. Part of Hwy 520 consists of a floating bridge that goes across Lake Washington. Lake Washington dominates the Seattle area and is miles long and 1 or 2 miles wide. It's between Children's Hospital & the town of Redmond. There's the Seattle side and what's known as the eastside. I'd guess that the 520 bridge is a mile or 2 long, and there's nowhere to go if there's a problem.

So, I was headed home in my car. Jack was on his way to get Sarah. Then my pager from the ICU beeped. I was stuck in commute traffic on the 520 bridge, driving in the rain, when I was paged. I immediately called the ICU on my cell phone. The guy tells me to pull over after I told him that I was driving. "I can't! I'm in the middle of the 520 bridge!" I tell him. He says, "Pull over as soon as you can." About this time, panic is beginning to set in. I demand some sort of explanation, and he tells me that they need me to come back to the hospital. "Why?! What's happened to my baby?!" I demanded. He got one of the nurses on the phone for me. She told me that Gabby had coded, they'd needed to do brief CPR, they had her back, but they needed to start her on ECMO. Yikes! This was my worst nightmare. I'd heard horror stories about ECMO. Basically, it's a bypass machine that sits by the bed. The patient's blood has to be really thinned while they're on it, and that can cause all kinds of complications. I was terrified. I got back to the hospital in record time. Took the first exit, turned around and went back. I half ran back to the ICU. Different docs came out who I recognized, and I again found myself in that little conference room. The other surgeon who had been in on Gabby's surgery exlained everything to me. The only other option was to beat her heart with drugs, and they figured that her recovery would take even longer that way. While it was scary, of course I consented.

The doctors then turned her ICU room into a mini operating room and put her on ECMO right there. Pretty amazing, huh? I waited until they were done and had her cleaned up. (I later found out that the nurse who came on to take care of her while this was going on had no room to enter in what had been a large room because it was so packed with staff trying to save my child's life.) I went in to see her after they were done. It was even more tubes. (At the most, I counted a total of 12 lines going into her little body.) With all of the equipment in the room plus an ICU nurse and ECMO tech, it was pretty crowded. But I was told that they were able to stop some of the medications as soon as they started ECMO. The theory was that it would give the right side of her heart a chance to rest. ECMO (extracorporeal membranous oxygenation to use the full term) takes blood from the right side of the heart and takes the place of the lungs, then puts it back into the left side of the heart to be circulated to the rest of the body. It's used sometimes on really premature infants who have really immature lungs.

So she stayed like that for a few days. She was medicated so she wouldn't move, and I don't think she remembers anything or felt anything thanks to the morphine and ativan that she got in pretty good doses. She didn't even open her eyes. I'd come for hours twice a day, stand at the head of her ICU bed and pet her head for hours. It was the only place that wasn't punctured. And I loved the way her wavy hair felt under my hand. Before her surgery, when I'd wash it, it would feel so springy. Kind of reminded me of her father's hair.

They tried to take her off ECMO after a few days, and she failed miserably. They couldn't understand why. So, to find out why, they took her to the catheterization lab on ECMO. This was a major production. It took something like 6 people to safely transport her and the equipment. I called it the Gabby train. When I saw them taking her like that, that was one of the times that I fell apart because I realized how sick my little girl really was. Well, remember that trouble spot in her left pulmonary artery that I talked about in Part 1? It was a trouble spot again. For some reason, her left pulmonary artery (LPA) had collapsed, resulting in not enough blood getting to her lungs, which is why she failed coming off ECMO. They placed a stent, like they'd put in an adult's coronary artery, in her LPA. After that, she slowly started getting better. About 6 days after putting her on ECMO, they tried to take her off again, and it was really close. I've never seen a surgeon agonize over a decision the way her surgeon, Dr. Cohen, did that day. She was so on the fence in terms of coming off. Then one lab value went up showing that she was under some stress, so they decided to keep her on for one more day. The next day, she sailed through the trial of coming off, and they removed her from ECMO that day, a week after her corrective surgery.

To be continued