· Modified Fontan Procedure ·
23 April 1996 [age 2½ years]
We took Victoria into the hospital on this Tuesday a couple of
hours before the operation was set to begin. At CHEO, there is a long
(seemingly endless, actually) hallway down which patient and family must
travel to get to the operating rooms. Making that journey and then giving
my child away at the door to the operating area is one of the most
difficult tasks I've ever had to perform. Twice.
They started open-heart surgery on our little girl at 8:00 in the morning
and operated for seven long hours. Victoria was undergoing a modification
of Dr. Fontan's original operation, called
Total Cavo-Pulmonary Connection. The
cardiovascular surgeon (the same talented fellow that did Victoria's
Glenn) had intended to put a
fenestration into the tunnel created
during the operation. However, during surgery, the cardiologist persuaded
him not to do that, as he thought Victoria's anatomy would not require it.
When the operation was done, Victoria was brought into the ICU to
recover. The tubes, wires, tape, monitors, and alarms were all back again.
Victoria came through the surgery extremely well. Still, we
were very aware that recovering from the surgery could and likely would be
much more difficult than the operation itself.
23 April 1996 - 25 April 1996
Victoria recovered quite well in ICU. She was awake later on the day of
the surgery. She had a breathing tube until the next day, however.
One of the many heart-breaking moments of Victoria's hospital stay came
when she spoke her first word after waking up in the ICU: "Why?"
Once the breathing tube was removed, Victoria did even better. Within
two days, her chest drainage tubes were removed and she was sitting up
and moving around a bit. During this time, despite all that she had
just been through and despite whatever pain and discomfort she was in,
she refused to go to the bathroom in a diaper. She remembered her
potty training, started just one week prior to surgery, and insisted
upon sitting on a bedpan!
26 April 1996
On this, the Friday after surgery, Victoria was released from the ICU.
She was doing well, except that she was always quite tired
and she had some trouble keeping her food down. Despite that, we dared
to believe that she was on a fast recovery track.
27 April 1996 - 28 April 1996
Victoria spent a quiet weekend in the cardiac ward of CHEO. She was
up and about a bit, but not too interested in walking. She slept quite
a lot and still could not keep down more than small amounts of food. The
weekend was good, as Victoria had some visitors come to see her. We
received a great deal of support from our family and friends throughout
Victoria's stay in the hospital and we will always be grateful for that.
The visits by Victoria's friends were especially important, as they
noticeably helped her disposition.
29 April 1996
Victoria had chest X-rays taken for the first time since her
release from the ICU the week before. The X-rays showed the presence
of large pleural effusions. An
echocardiogram was also done on
Victoria. It confirmed the X-ray findings and also led the cardiologist
to believe that Victoria had developed a blood clot. A subsequent
trans-esophogeal echocardiogram (TE)
confirmed the presence of a blood clot at the site of the Fontan surgery.
This was a potentially dangerous situation, as this clot could lead to a
stroke, should it be dislodged and float through the blood stream.
Victoria was sent back to the ICU, had two chest tubes put back in and was
started on intra-venous (IV)
heparin to try to prevent the growth of
the blood clot. This was devastating. We were given a range of options
for treating the blood clot, from doing nothing, to inserting a
the area, to re-operating. In any case, nothing would be done for
several days, to see if the growth of the blood clot could be halted.
30 April 1996 - 1 May 1996
The fluid having been removed from her lung cavities, Victoria's spirits
picked up incredibly and she started eating very well. The strong and
healthy Victoria that we had taken to the hospital for open-heart
surgery had returned.
2 May 1996
Victoria had another TE done, which showed no change
in the blood clot (this was good as it meant that the heparin had
prevented the clot from getting bigger). The cardiologist scheduled a
cardiac catheterisation for the following Monday, at which time he would
be able to tell exactly what, if anything, needed to be done about this
3 May 1996
Victoria's pleural effusions had slowed to almost nothing now,
so the drainage tubes were removed from her chest once again.
The surgeon also released her from ICU again, so that we could get her
out of bed and moving around (the best way to recover from a Fontan).
4 May 1996 - 5 May 1996
On this weekend, we were able to take Victoria outside of the
hospital for the first time to get some fresh air. She was still on
heparin, so her IV trolley had to accompany us. Despite that inconvenience,
we had a great weekend. Victoria had some friends come and visit for
the second time and that raised her spirits, as well as ours. She played
well, started walking more, and kept eating very well.
6 May 1996
Victoria had another TE and a cardiac catheterisation to
examine and possibly treat the blood clot with a stent. Fortunately,
angiograms done during the
catheterisation showed that the clot wasn't as bad as
the TEs had made it out to be, so the cardiologist decided that no
intervention was required. Now that was good news! Victoria was then
started on oral
Coumadin to eventually replace the
7 May 1996
The heparin IV was turned off, freeing Victoria of
any "attachments" when moving about. She continued to regain her
strength and mobility. Without the hindrance of the IV trolley, she was
able to navigate most of the outdoor playground with very little
8 May 1996
We got a big surprise when the cardiologist told us he was
releasing Victoria from the hospital. We had been told that she would
have to stay until the following weekend, so they could get the dosage
of Coumadin right. The cardiovascular surgical fellow paid
Victoria a visit to remove her pacemaker wires. Then, they let her go, on the
condition that we return frequently for blood tests. That was a great
Victoria was sent home on a small pharmacy of medications: Coumadin,
Lasix, aldactazide, and a
9 May 1996
Fate was smiling on us that week of Victoria's release from
hospital. The day after Victoria got home, our second daughter,
Catherine, was born. We figure that Catherine knew what was happening
to her sister and waited until four days past her expected arrival date
intentionally, so as not to burden us too much. That day, with one
daughter recovering nicely at home and another completely healthy
daughter just born, I think I was the happiest man on the planet.