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| Victoria (May, 2005) |
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| Victoria with proud Mom and Dad at Graduation |
The first time I took Victoria to the doctor because of the vomiting (about 10 days after coming home) she weighed 8lb. 4oz. Dr. Toland checked her and felt she was OK. She was due for a regular checkup about 10 days later. At that time her weight was down to 7lb. 12oz. The doctor thought it was probably a scale fluctuation and told me to come back in a week. At this point she was down to 7lb. 8oz and so the pediatrician decided to take a chest X-ray and I guess the rest is history! The next morning we were at a PC in a nearby town. He did all kinds of tests and gave us a diagnosis. Of course, at this point she was in heart failure. Dr. Monnarrez told us we needed to get to Houston that night and he made the plane reservations for us. We came home to tell everyone the news and packed for the trip. The weather was bad, the plane was late, and the cab driver didn't know how to get to the hospital! It was an appropriate ending to a terrible day!
When we finally got the hospital all the tests were redone and confirmed everything our local PC had told us. Victoria spent the night in NICU and then after differing opinions from the doctors they decided to admit her to the pedicard floor until they did her cath on Monday (this was Saturday). Dr. Gutguzell did the cath, suggested surgery to repair her coarctation and a banding of her pulmonary artery in order to protect her lungs. She had surgery on Wed. Recovery went smoothly and we went home 2 weeks after that horrible night when we had arrived. Victoria ended up in the local hospital about a week later because she quit eating. She was in for a couple of days and then they sent us home. Her local PC told us she was still in heart failure and needed to gain weight.
The next 2 years were very hard. Victoria was a failure to thrive baby and refused to eat. She ended up being ng tube feed for several months. Luckily, the pediatrician never made me learn to insert it. I took her to the office every 3 days to have it changed and if she pulled it out on the weekends Dr. Toland would meet us at the office to reinsert it. She had many echoes and we saw the local PC quite often. In Oct. 83 she had her second cath in Houston, done by Dr. Charles Mullins - still her Houston PC. At this time she was on Lanoxin, Lasix, and Aldactone. She caught everything that went around and for the first 6 years of her life seemed to always be on antibiotics. She didn't end up in the hospital again until at 18 mo. when she had pneumonia and her regular doctor was out of town. She was put in the hospital overnight. Her regular pediatrician was good about not putting her in the hospital every time she had pneumonia. If he had, we would have lived there!
Her next cath was at 2 years of age done again by Dr. Mullins. She had problems and had to have a blood transfusion. We were also informed that both of her femoral arteries were blocked and they would not be able to do a cath that way again. Dr. Mullins is planning to do another cath this fall (1999). It will be her fourth cath, but it has been 12-1/2 years since her last one. This will be like a new experience for Victoria. I am not sure it is one she will like...
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| High School Prom |
To go on with Victoria's story, the next 4 years were a waiting game and trying to keep her well. She never needed to be hospitalized again until her Fontan in 1989. The doctors in Houston kept putting off the Fontan until she was older and more of the procedures had been done. Dr. Grady Hallman did her surgery (he also did her first one). She was in the hospital for almost 3 weeks. Everything went fairly well and she had no big problems. Well, except, once when in PICU the nurses were pushing fluids in her IV, we were all talking to Victoria and she was talking to us and all of a sudden she started to do what I would call have a seizure. Her blood pressure went way down, all her buzzers went off and all the doctors came running. It was really scary! Needless to say I didn't leave her for a moment that night. Even the nurse assigned to Victoria was scared! It never happened again the docs thought it was a combination of the fluids being pushed and the meds she was on.
After coming home from having the Fontan it took her body several years to adjust. She would have various symptoms. They never turned out to be anything dangerous, but they were worrisome. In the past 4 years her health has been the best ever. We just hope to keep it this way for a long, long time. Victoria is now a junior and marches with her high school band. The heat is very hard on her, but she is learning to limit herself. She rests as needed and makes sure to always have something to drink with her when they are practicing out in the heat. Unfortunately, this is not always enough, but Victoria refuses to give up.
This is really just the very basics of Victoria's 16 year journey with CHD. So many more things have happened and so many more doctor visits have transpired. I have just touched on some of the things she has been through. After reading other's stories I see just how lucky and blessed we have been. Victoria gives us much to be thankful for!
August, 2000
Dr. Mullins, Texas Children's Hospital, did Victoria's 4th cath. It ended up being a 6 hour procedure. Dr. Mullins used 4 stents to rebuild Victoria's inferior vena cava because it was very narrow, making the cath very hard to do. He had a hard time getting in the groin as one side was completely blocked. He also had to go in through her neck. He used 2 more stents to straighten out a loop (almost 360 degrees) in her pulmonary artery. It took Victoria awhile to recover, but she has been doing wonderfully ever since.
May, 2005
Victoria graduated from St. Edward's University with a degree in Business Management. She will be attending college in the fall where she will be pursuing a degree in Hospital Administration.
July, 2005
Victoria had a great checkup with her PC. Overall she is doing very well and her heart seems to be very stable.
