Back to Portland
September 5, 1999, my parents flew to Portland with us this time which made it so much better. I think that this was harder on my mom and dad that I had anticipated. George and I were able to handle this so much differently than the first surgery. Shawn was in great condition, it was planned, we were able to do as much research as we wanted, we knew the hospital and staff, etc, but this was all new for my parents.
The 'Glenn' : The aim of this operation is to maintain the flow of deoxygenated (blue) blood to the lungs by attaching the superior vena cava directly onto the pulmonary artery. This is called a cavo pulmonar shunt.
This operation is necessary as Shawn's heart had grown, but the Gore-Tex shunt remained the same size. Therefore, that shunt was no longer able to provide Shawn with the oxygen he needed. Since the cavo pulmonary shunt was made with Shawn's own tissue, it will grow with the rest of the heart.
This surgery was NOTHING like the first. He had no complications what so ever. He was out of surgery, and off the breathing tube within hours. We were in the PICU for 3 days and out on the floor for 4 days and then home. I realize that it was a major open heart surgery, but compared to what we had been through 5 months before, it really was a cake walk.
We talk about the Fontan, Stage 3
Before we leave Portland, we talk to Dave about the 3rd stage, the Fontan. Normally, this 3rd stage is done between 3 to 5 years. The Fontan is a much more complicated surgery than the Glenn and Dave let us know that unless a child is considered a 'perfect' candidate for the Fontan, he didn't recommend it. The complications that could happen after were very serious and not worth risking. He then assured us that Shawn could live years on the "Glenn" heart, it would just mean lower saturation levels, which in turn means, looking blue and less energy . I knew from the begining that these surgeries were a bridge to transplantation. Chances were, my son would need a heart transplant in the near future.
The next 3 years and 3 months
We enjoyed our son everyday, he decided that he wanted to play hockey like his dad and we enrolled him in skating lessons. I unhappily enrolled him in pre-school, which I ended up loving because Shawn loved it so much, and we went to Disneyland for Shawn's Make-A-Wish. During this time we bought a new, much bigger, house in Eagle River, and found out that we were expecting our baby girl, Haley (due Ocober 4, 2002) . We managed to stay out of the hospital for the most part, we had regular appointment with Dr. Scott and his pediatrician, Dr. Mondsager. We were careful about his meds and only called paramedics once during this time, he wasn't even transported. He was looking a little blue to me and I had run out of oxygen in the middle of the night, so the paramedics brought me a canister.
January 2002, Shawn is scheduled for a cardiac cath with Dr, Wellmann here at Providence in Anchorage. During this time, George and I had just accepted that Shawn would probably never be a candidate for the Fontan, however, the more I read about it, the more I wanted him to have it. I just understood it to mean much more oxygenated blood, therefore , much more energy and less blue coloring in his lips and fingertips. A couple weeks after that cath, Dr. Wellmann's office called to tell me that Portland (meaning his surgeons and cardiologist, Dave) had discussed Shawn and agreed that he would be a candidate.
I was thrilled. We began preparing for the Fontan, Stage 3.
April 4, 2002, the begining of the longest, most difficult 9 months of our lives
Shawn's surgery, The Fontan, was scheduled for April 4, 2002, at Legacy Emanuel Hospital. My parent's once again went with us to Portland. I was nervous and very worried about this surgery, I was also 3 months pregnant with our daughter.
Right after surgery, there was a little struggle to stabalize his blood pressure. Shawn had "chest tubes" which I was familiar with, since he always had them after surgery. Normally they drain into a contraption that sounds like an aquarium and lulls you to sleep. I noticed that along with the 'normal' chest tubes, there were other tubes coming out of his chest. These were smaller and weren't attached to anything. They were capped off on the end. I asked about them and learned about 'pleural effusions'. I had no idea that night in the PICU, that this condition 'pleural effusions' would consume our lives for the next 9 months, and almost claim the life of my son many times.
Pleural Effusions, what they are, and why I hate them
How I understood "pleural effusions":outside of the lungs is a thin, 'pocket' with a very slight amount of fluid - this area is called the pleura. Pleural effusions are when fluid builds up in the pleura, which is common with heart surgery and other conditions, such as pneurmonia. That first night in the ICU. the nurse began to aspirate (drain) these pleural effusions by attaching a syringe and pulling the fluid out. The size of the syringe was a 20 cc syringe, not the largest I've used (which is a 60 ml) but a fairly large syringe. The nurse began and the fluid was the color and consistancy of blood, she said that was normal, since he had just had major open heart
