Victoria's Story

· 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 stent in 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 blood clot.

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 heparin IV.

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 assistance.

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 day.

Victoria was sent home on a small pharmacy of medications: Coumadin, Lasix, aldactazide, and a potassium supplement.

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.

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