Over the two years since his Glenn, Phillip's
oxygen saturation's had continually gone down. His energy level had also gone to the point
where he was out of breath if he walked up the stairs. In late summer he had a hard time
keeping up with his neighborhood friends, so we new that surgery was once again in the
near future, we were thinking the spring of 2000.
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
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
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
went back to the hospital the next day. We stopped that drug and after one night we went
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.
After we got home the irregular rhythm started again. We had an
appointment with Phillips cardiologist, Dr. Frommelt, and he was not concerned with the
irregular rhythm at this time. The irregular heart rhythm resolved itself in about two
weeks and has not come back.