At Phillip's cardiology appointment we found that his oxygen saturation's had dropped considerably, low to mid 70's. Dr. Fommelt thought he should have his fontan and he suggested that we have his heart catherization in the following month and then have his fontan shortly after the heart cath.

Phillip had his heart catherization in September. It was very difficult letting the nurse take Phillip from us to the catherization lab. In the catherization lab the doctors would be checking out the anatomy of Phillip's heart and vessels. They would also be checking for pressures in different parts of his circulatory system.

My heart skipped several beats when a nurse found us in the waiting room and told us that they wanted to see us in the catherization lab. So many thoughts go through your head. When we got there Dr. Frommelt told us everything was fine. Phillip had grown a collateral vein, and he wanted permission to coil it off in the cath lab. We gave him permission and the collateral was successfully coiled off.

A collateral vein is a vein that the body grows on its own to try to repair his heart condition. The vein runs from the aorta to the pulmonary artery. The problem is that instead of fixing Phillip's circulation, it adds to the problem by causing more mixed blood, thereby lowing his saturation's.

Phillip's heart cath went very well. After the collateral was coiled and he came back to the room his oxygen saturation's were at 85 percent. With his saturation's that high we did not need to have the fontan as soon as it was scheduled. However we decided to go ahead with the fontan as originally scheduled. Not the easiest decision, but we have had to make hard decisions all of Phillip's life, and we can only hope and pray that we continue to make the best decisions for Phillip as time goes on.

So in the middle of October 1999 for the third time in his life we put the life of our 3 1/2 year old son Phillip's into the hands of God, and a handful of very talented nurses, doctors, and his surgeon Dr. James Tweddell. This was by far the hardest thing we have ever done, and it was the hardest day of our life's …

In the fontan surgery the Inferior Vena Cava (IVC) is attached directly to the pulmonary artery. In the Glenn surgery the Superior Vena Cava (SVC) was attached to the pulmonary artery. So after the fontan surgery all of the "blue blood" from Phillip's body is directly returned to his lungs, and there is no mixing of red and blue blood in his heart.

While the surgery went on, the cardiovascular nurse clinician, Maryanne came out every hour to tell us how Phillip was doing. The surgery lasted about 8 to 9 hours and everything went very well in the surgery. When Phillip came out of surgery he had his breathing tube out already. We got to see him for a moment on his way to the PICU. The first thing that we noticed was that he looked very pale. We found out that because we were so used to seeing him "blue" that he would look pale to us. It was very nice to see him without a "blue" shade to his skin. His oxygen saturation's were in the mid to high 80's. The oxygen saturations were in the 80's because the surgeon leaves a hole (fenestration) between the Inferior Vena Cava and the heart. This causing some mixing of red and blue blood, causing the saturations to be lower than normal.

Phillip had a some complications during his recovery from the fontan. We had been sent to the recovery floor after about ten days in the pediatric intensive care unit. Upon attempting to remove the external pacemaker Phillip developed an atrial fibrillation. So after one night on the recovery floor we were sent back to the PICU. With medication and with "overdriving" the external pacemaker the doctors got Phillip's heart back to a normal sinus rhythm. However, shortly later Phillip's heart started to have a very irregular rhythm. We stayed in the PICU for a couple of days and we were transferred back to the recovery floor. Phillip seemed to tolerate the irregular rhythm, so we monitored it for a few more days, and then after eighteen days in the hospital we were sent home.

That night Phillip had an adverse reaction to the medication that he was on to stop the atrial fibrillation from coming back. The joints in his legs got so stiff that he had them pulled up to his chest and he could not unbend them. So…. We went back to the hospital the next day. We stopped that drug and after one night we went home again.

About one month after surgery his oxygen saturations dropped into the mid 70's. This was quite alarming to us, and his cardiologist Dr. Frommelt scheduled a echocardiogram. It was determined that the fenestration had stretched and we should schedule a heart catherization, and surgery to close the fenestration. We had planned on having the fenestration closed about one year after the fontan. So much for plans….

The heart catherization went off without a hitch. We went home the same day. We then returned to the hospital the next day to have the fenestration closed. The surgery went great, only took about two hours. When we saw Phillip he had oxygen saturations in the mid to high 90's. One complication, after he got to the recovery floor he started to have irregular heart rhythms once again. The rhythm did resolve itself overnight, and we went home after only that one night in the hospital.