Sunday, April 14, 2013
Ready for our Miracle
As we approach our ten month listing anniversary, I fell now, more than ever that Kemarah is strong and healthy and ready for her new heart. She is finally almost completely recovered from her Berlin surgery and is amazing us and everyone else everyday. She rides a tricycle, walks as many laps as our battery time will allow, is starting to eat a little again, and is usually in a very good mood! She has come a long, long way over the past couple of weeks. She is almost up to 40 pounds, which is more than she has every weighed, and is getting stronger every day! Please continue to pray for her miracle. We are so very ready to receive it. Kemarah's 5th birthday is just a little over a month away, and I would love nothing more than to celebrate her 5 years of life at home with a healthy new heart! What an incredible birthday gift that would be!
Monday, February 11, 2013
Our Journey to Berlin
About a month ago, Kemarah started having a particularly hard time. She was not responding very well to her diuretics and her heart failure continued to worsen. Over the past 6 weeks we have been back and forth from the regular cardiology floor and the Cardiovascular ICU. Last Wednesday, her team of doctors decided that she had plateaued on her medications and they felt that it was time to take a drastic step in her treatment plan--they wanted to place her on a Ventricular Assist Device, namely, a Berlin heart.
Wednesday night (Jan 30) we were moved back up to ICU and the conversations began Thursday as to what the plan of care would be for her. Friday morning, we were blessed to have 15 of the most brilliant minds in the world (as far as children's heart failure is concerned) sitting together in one room talking about Kemarah and what needed to be done for her. There were 5 heart failure/transplant doctors, 5 of the best pediatric cardiac surgeons in the world (to include Dr. Fraser, who pioneered the study to gain FDA approval of the Berlin heart in the U.S., and Dr. Adachi, who had just returned from Japan where he had travelled to install the first pediatric Berlin device in that country) 5 transplant/surgical nurses, and the perfusion experts. After meeting for a couple of hours, they determined that Kemarah would likely need to receive two Berlin devices--one to help the left side of her heart pump, and one for the right side. Over the past 7 years, Texas Children's Hospital has implanted over 50 of these devices in children, but only 2 of them received 2 devices. Once again, Kemarah is anything but normal. Her surgeon, Dr. MacKenzie explained that she is in rare form and that her right heart is actually much worse than the left, therefore simply placing the device on the left side, like they usually do, would not give her the support that her poor body needed. By Friday afternoon she was on the surgery schedule for Monday morning.
Wednesday night (Jan 30) we were moved back up to ICU and the conversations began Thursday as to what the plan of care would be for her. Friday morning, we were blessed to have 15 of the most brilliant minds in the world (as far as children's heart failure is concerned) sitting together in one room talking about Kemarah and what needed to be done for her. There were 5 heart failure/transplant doctors, 5 of the best pediatric cardiac surgeons in the world (to include Dr. Fraser, who pioneered the study to gain FDA approval of the Berlin heart in the U.S., and Dr. Adachi, who had just returned from Japan where he had travelled to install the first pediatric Berlin device in that country) 5 transplant/surgical nurses, and the perfusion experts. After meeting for a couple of hours, they determined that Kemarah would likely need to receive two Berlin devices--one to help the left side of her heart pump, and one for the right side. Over the past 7 years, Texas Children's Hospital has implanted over 50 of these devices in children, but only 2 of them received 2 devices. Once again, Kemarah is anything but normal. Her surgeon, Dr. MacKenzie explained that she is in rare form and that her right heart is actually much worse than the left, therefore simply placing the device on the left side, like they usually do, would not give her the support that her poor body needed. By Friday afternoon she was on the surgery schedule for Monday morning.
And Fall Becomes Winter
In October 2012, Kemarah was readmitted to TCH for worsening heart failure. This began a journey that I never anticipated. We went through a time of fear as we discussed possible surgical options, frustration as we waited for the heart that seemed to never come, excitement as Kemarah's status was elevated again to the highest priority, disappointment that there were no "easy answers" to help her along the way, and utter exhaustion from "living" in the hospital for almost 3 months. I will spare most of the medical details here because they tend to get very boring, and even repetitive. Thankfully we have a fabulous team of very gifted and dedicated doctors that have to make most of the "hard" decisions for us. We spent Halloween, Thanksgiving, Christmas, and New Year's at TCH, and I am so thankful that Kemarah was well enough to experience all of those holidays in our own unique "hospital" way. The past couple of months have been especially trying in that it's easy to forget why we are actually here! Our goal, of course, is to get a new, healthy heart. We tend to get caught up in the day to day ruts of what has to be done in the meantime to carry her to transplant. It's something that at times can seem as though is never going to happen.
Tuesday, January 1, 2013
Catching Up, Part II
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.
"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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