Victoria's Story


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Updates:

May 1996 · January 2002 · March 2003 · July 2004 · April 2005

May 1996
Victoria fully recovered her mobility very soon after arriving back home from the hospital after her Fontan. For a time, we had to be careful not to let her harm her chest and we still have to try harder to prevent bad cuts, scrapes, and bruises. Of the four drugs that Victoria was taking upon release from the hospital, only one remains. We were able to stop giving her the aldactazide and potassium supplement (two very vile-tasting drugs) about a month after she came home. The Lasix was also reduced substantially at that time, and then stopped completely one month later. Victoria will likely be on Coumadin for quite sometime. Her cardiologist's view is that she should take Coumadin indefinitely, to ensure that no blood clots form in her heart. He believes that she has a pre-disposition to clotting in the area of her Fontan. If this works itself out over time, then maybe the drugs can stop. We'll see.

Victoria's general health is now much better than it was before surgery. She doesn't pant anymore when walking (or even running) across the room and her colour is incredible! She used to have flaring red cheeks. The doctor told us that this was possibly the result of her poor oxygen level and circulation. That's completely gone now. She's pink! Really pink! It is so pleasing to see her so active and full of energy. She plays with all of her friends outside many evenings and she loves her little sister.

As far as physical activity goes, Victoria does not really have any restrictions yet. She's a little bit young for competitive sports, so we don't have to keep her from participating in them just yet. Victoria loves swimming and takes lessons regularly. She has taken gymnastivs classes as well. She's also a budding cyclist, getting out whenever the weather permits. In general, she's a very active little girl.

We've been extremely fortunate with Victoria. She's had the finest doctors to take care of her from the start. She's fought her way through some very tough operations and each time emerged stronger than before. She's a pleasant, bright, beautiful little girl with a long life ahead of her.

Leslie and I have been on an emotional roller coaster since before Victoria was born. We know deep down that the ride is likely not over yet. For the time being, however, we're on a pretty level stretch of track and there aren't any big hills or loops in sight. We've seen just how precarious a person's hold on life can be. We intend to see that our daughters enjoy and appreciate life as much as they possibly can. Our family is everything to us; nothing matters more.

January 2002
Having just completed a re-design of this site, I thought I would add a few more words. Victoria remains in excellent health. She is, in every way, a normal young girl. She has no restrictions on her activities and can participate in most activities without difficulty. She has many friends and does well in school.

Last summer, for the first time, Victoria did find the limits of her endurance. She had been taking swimming lessons and had reached a level where swimming the front crawl over a certain distance was required. While she could do the swim, her breathing was quite rapid and there was no way she could handle the rhythmic breathing that went along with the front crawl.

Victoria still takes Coumadin to "thin" her blood. Her Fontan surgery places her in a certain risk category for developing blood clots. The Coumadin dosage is low and her INR is also kept fairly low. We've never had any serious problem with bleeding. Victoria will likely take Coumadin for the rest of her life.

Victoria had her sixth annual post-Fontan check-up this month. Previous check-ups had involved the use of a Holter monitor to record her heart activity for a day. This was not required this year, to Vicky's relief. She was found to be completely healthy. Vicky is a terrific little girl with a bright future ahead of her.

March 2003
Another year has gone by and Victoria had another annual check-up this past January. Once again, she has come through with flying colours. This year, however, we did have a bit of a scare.

Vicky's annual check-ups include a standard set of tests: electrocardiogram (ECG), echocardiogram, vital signs (blood pressure, pulse, etc.), and oxygen saturation. The oxygen saturation test measures the amount of oxygen in the blood. "Normal" people have a saturation at or near 100%. Vicky's oxygen saturation is usually around 95%, which is normal for her. This time, it was 92%. No one test alone is used to determine the health of one's heart, but this test has always been an indicator to us. A downward trend would be bad. The test was repeated several weeks later, however, and the results were back to normal - 95%. That was a tremendous relief.

Vicky also had a Holter monitor test this year, which showed normal heart operation. In future years, Vicky will need some of the more invasive tests that she has had in the past, such as a trans-esophogeal echocardiogram (TE) and a cardiac catheterisation. This is because, as her body grows, it is getting more difficult for her heart function to be viewed by echocardiogram. Her bones, muscles, and body mass are getting in the way! These other tests will allow Vicky's cardiologist to get a better picture of how her heart is doing.

The few weeks where we thought that Vicky's oxygen level was low reminded us of how it was before the surgeries. Back then, we spent a lot of time worrying and dreading the coming surgeries. Since her last operation, there have not really been any problems and we have not been in "heart mode." We are very fortunate that Vicky has been blessed with excellent health. It is too easy to take this for granted. This brief period of time brought back many of the memories from years ago. We are thankful that all has proven well and Vicky remains in excellent health.

This past winter brought two new tests for Vicky as well: a bone scan (last November) and a bone density test (February). Vicky takes Coumadin, an anti-coagulant. Coumadin prevents blood from clotting as quickly as blood normally would. Many Fontan patients are required to take Coumadin, as blood circulation in Fontan patients is slower than that in "normal" people. Blood flowing slowly is more prone to clotting. Vicky did develop a blood clot in her heart after her Fontan surgery. Coumadin prevents a recurrance of this clot.

Taking Coumadin is a double-edged sword. While it certainly helps to prevent blood clots, this causes prolonged bleeding from cuts, bruises, etc. We have not had any serious problems in this respect, but it is always a concern. Regular blood tests are required (at least once per month), to check blood clotting speed, in order to regulate the dosage of Coumadin required. (Vicky is a regular at our local blood lab. She's a favourite of the technicians, as she doesn't flinch during tests.)

Coumadin may also have another side effect. Some studies in adults have linked it to poor bone mass in the body. Coumadin may affect the density of bones. Unfortunately, there are no studies on the effects of Coumadin on children. We are somewhat concerned about this and, this year, so was Vicky's cardiologist. That's why she sent Vicky for the two bone tests.

Both the bone scan and the bone density test produced positive results. No weaknesses, cracks, or other structural problems were found and the density of Vicky's bones is perfectly normal. Nothing unusual was found at all. Great news!

July 2004
Vicky's annual check-up in March of this year was uneventful. This was good news! Her usual set of tests all looked good and the doctor had no concerns.

This month, Vicky underwent a trans-esophogeal echocardiogram (TE) at CHEO. Vicky's cardiologist asked that this be done for a couple of reasons. Vicky is getting older and the usual echocardiograms no longer provide the doctor with clear views of her heart. The TE, on the other hand, provides an inside look at it, resulting in much clearer images.

Vicky is anti-coagulated. She takes Coumadin daily, to keep her blood from clotting as quickly as blood normally would. As noted above, Coumadin has its drawbacks. The cardiology community is changing its collective thinking on the merits of having children take Coumadin. A possible alternative is Aspirin, which also helps to prevent blood clots. Unlike Coumadin, Aspirin has few, if any, side effects and no blood tests are required to regulate dosage. Needless to say, we were in favour of switching to Aspirin, if it did not pose any risk to Vicky.

The second reason for the TE was to help Vicky's cardiologist determine whether it was safe to have Vicky take Aspirin rather than Coumadin. The doctor would use the TE to check for blood clots in her heart or blood flow that might lend itself to clotting. Unfortunately, the TE did indeed show that Vicky's blood is still prone to clotting inside her heart. So, she remains on Coumadin. This is a little disappointing, but at least it is not unfamiliar.

On a brighter note, this spring at school, Vicky was required to do a project on one of the human body systems. She chose to do the circulatory system, with sections on congenital heart defects in general and her own heart specifically. This was the first time that Vicky had prepared work having to do with her heart and presented it to her class. The project entailed doing research (books and Internet) on the circulatory system and then documenting proper function, protential problems, and healthy maintenance. Clearly, Vicky's heart fits into this well!

We are quite proud of the work that Vicky did on this project. I have converted it to web form and it can be found on Vicky's School Projects page. (Note that this work is in French, as Vicky is in a French immersion program at school.)

Ce printemps à l'école, Vicky a dû faire un projet au sujet d'une système du corps humain. Elle a choisi la système circulatoire, avec des sections concernant des cardiopathies congénitales et aussi son propre coeur. C'était la première fois que Vicky a travaillé au matériel au sujet de son coeur. Elle a présenté ce projet à sa classe. Le projet a necessité faire de la recherche à ce suject en livres et sur l'Internet et décrire la fonction normale, des problèmes possibles, et comment maintenir un coeur sain. C'était un bon projet pour une élève avec un coeur spécial!

Nous sommes très fiers de Vicky et de son travail à ce project. Je l'ai transformé pour ce site web. On peut le trouver sur la page des projets d'école de Vicky.

April 2005
Vicky had her annual check-up in March of this year. This year's visit brought another new test for Vicky: an exercise stress test.

The stress test was very much like a trip to the gym for Vicky. She was hooked up to heart, oxygen, and breathing monitors. The breathing monitor was a machine which essentially measured her lung output, via a tube in her mouth. The test itelf was a 20-minute stationary bike ride, up and down a long hill (so to speak). The purpose of this test was to determine Vicky's level of endurance.

Vicky did very well during this test. She found it difficult, not because of the bike ride, but because of the tube into which she had to breathe for the duration of the test. The results were interesting: Vicky's endurance level is roughly 65% of that of a "normal" kid her age. This is, apparently, just about average for a Fontan patient. I can't say that these results made us happy, but we aren't concerned, either. We see Vicky working and exercising daily, without difficulty. She's doing just great!


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