It was a hot summer evening--July 31, 2012-- just 2 short weeks before Kenya would be starting his brand new job, and we were headed to Texas Children's Hospital to be admitted for something I thought was really quite simple to fix. After getting checked in through the ER, we finally saw the cardiologist on call for the evening and he was able to give us an explanation as to why we had been called away from our peaceful Italian meal. Apparently, Kemarah's heart had decided to act a little crazy and start beating in some weird rhythms. For anyone that knows much about human hearts, this is not a good thing. Your heart is supposed to have a steady, regular rhythm--my daughter's had decided it didn't like to be steady or regular anymore. She was having episodes of ventricular tachycardia.
"V-Tach", as the medical professionals call it, occurs when the bottom portion of the heart, the ventricles, contract or beat very quickly (greater than 100 beats per minute) and don't beat in sequence with the top portion of the heart. This means the lower chambers of the heart do not have enough time to completely empty the blood that is supposed to be recirculated throughout the body. We were told that so far Kemarah's heart had always corrected itself, even though she had experienced some fairly long episodes--one as long as 29 beats in a row, but that V-Tach was very dangerous if the heart did not come out of the abnormal rhythm. It is a major cause of sudden death due to cardiac arrest.
Needless to say, after hearing this explanation we were more than happy to be camping out in the hospital until the doctors could figure out how to manage this new-found issue. Kemarah was put on 24 hour telemetry, which means she had to wear little stickers all over her chest that transmitted a signal to a computer monitor at the nurses' station. This monitor is watched constantly, so someone is watching every heart beat she has in "real-time". When something funny happens, they call her nurse and have them come check on her. These abnormal beats are recorded then and given to the doctors the following morning. For a week and a half the doctors experimented with dosages of her current medications--trying to find something that would manage the V-Tach without totally bottoming-out her blood pressures. This proved to be unsuccessful. After hearing the frustration in their voices, I began to wonder if we were going to get to go home at all. Finally, the suggestion was made to try another drug. They were apprehensive about it because it is generally not used in children, therefore there isn't much research about it and how it make affect a child. We agreed to try it. After all, we WERE in a hospital and being monitored constantly. If something was going to go wrong with a medication, we were in the right place.
We started the new medication, and it seemed to give us some progress. Her VT episodes had decreased in frequency and duration, although not disappeared completely. At this point, the doctors broke the news that they would only be comfortable with us going home if Kemarah had some kind of defibrillator as a safety net.
So, to make a long story short, we ended up going home EVENTUALLY with an AED that we were required to take with us everywhere and a pulse-ox monitor that Kemarah had to wear anytime she was asleep. This was a "Band-Aid" solution to the problem that would at least allow us to go home.
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