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.
Wednesday, November 14, 2012
Catching Up, Part I
Wow! I can't believe it's been 7 months since I posted anything. My apologies for that. It certainly hasn't been for lack of information, but more just lack of discipline on my part. I will start catching up in segments, since I'm sure no one wants to sit and read a 10 page blog all at once.
Let's go back to June 2012. We made our big move to Houston in the middle of June and began to get settled in right away with the much appreciated help and support of my parents. Kemarah was officially listed for cardiac transplantation on June 28, 2012 as a status 2 patient. Status is important on the UNOS (United Network for Organ Sharing) listing as it can be a great indicator in how long you will actually be waiting. There are 4 status categories used in UNOS:
Status 7 patients are inactive for some reason, meaning if they were to have an organ match, they would not be able to receive it at that time for some reason.
Status 1A patients must stay in the hospital on IV drugs, a heart assist device, a ventilator, or have a life expectancy of less than a week without transplant. For patients under 18 years of age, the indicators for 1A status may be slightly less severe. 1A patients have the highest priority on the transplant list.
Status 1B patients are not confined to the hospital, but require a heart assist device or some kind of continuous IV meds at home. 1B patients have the second highest priority on the transplant list.
Status 2 patients are basically any other active candidates that don't meet the criteria for 1A or 1B status.
We began our wait at the end of June in a status 2. We were hopeful to stay that way for our entire wait, as it seemed like the criteria to have Kemarah's status upgraded would mean that she would be very ill. We were perfectly content to keep our little girl at home, even if that meant we had to wait a little bit longer.
Kemarah's doctors agreed that they would see her once a month until we got "the call" or until her condition progressed to a point that they thought she needed to be seen more often. So we went on our way--getting settled into our new apartment, learning the ropes of our new city, checking out things like the zoo, the aquarium, and of course, my favorite, the restaurants.
Kemarah went back to clinic the last week of July for her regular monthly appointment. Everything looked "about the same" they said and sent us on our way with a 24 hour holter monitor that would record her heart rhythms for 24 hours. We just had to return it the next day to be read and kept in her records. We had done these holter monitors periodically in the past, so we really thought nothing of it. We brought it back the next day, which happened to be a Friday, and went ahead and enjoyed our weekend.
It was the following Tuesday as we were sitting down to eat at one of Kemarah's favorite spaghetti joints that we got a call from our transplant coordinator, Kim. She explained to me that Kemarah's holter report has shown some concerning rhythms and that we needed to bring her in to be admitted right away. So we quickly gathered up our freshly served spaghetti and meatballs, went by the apartment so that I could throw some stuff together for an overnight stay, and headed to Texas Children's Hospital for the REAL beginning of our journey to a new heart.
The following link has lots of good info for transplant questions. It's quite fascinating actually!
UNOS Info
Kemarah went back to clinic the last week of July for her regular monthly appointment. Everything looked "about the same" they said and sent us on our way with a 24 hour holter monitor that would record her heart rhythms for 24 hours. We just had to return it the next day to be read and kept in her records. We had done these holter monitors periodically in the past, so we really thought nothing of it. We brought it back the next day, which happened to be a Friday, and went ahead and enjoyed our weekend.
It was the following Tuesday as we were sitting down to eat at one of Kemarah's favorite spaghetti joints that we got a call from our transplant coordinator, Kim. She explained to me that Kemarah's holter report has shown some concerning rhythms and that we needed to bring her in to be admitted right away. So we quickly gathered up our freshly served spaghetti and meatballs, went by the apartment so that I could throw some stuff together for an overnight stay, and headed to Texas Children's Hospital for the REAL beginning of our journey to a new heart.
The following link has lots of good info for transplant questions. It's quite fascinating actually!
UNOS Info
Thursday, April 12, 2012
Up-Rooting
Hello Friends,
As I mentioned in my last blog, we are in fact moving to Houston, TX. At the most recent appointment in April, the doctors confirmed the state of Kemarah's sick heart and agreed that the only way to "heal" her would be to give her a new heart. After coming to grips with the fact that this is no cure at all, simply a new set of symptoms that will require new medications and a new way of life for those of us closest to her, I have become almost excited that we are finally moving forward with something. After more than a year of uncertainty, fear, anxiety, and many, many questions, I feel like we finally have some kind of solid answers. Although living with a transplanted organ will be a challenge, it will make my baby feel better, and for all intents and purposes she will be "normal" and able to do all the things a healthy little girl should be able to do.
I feel as though 2011 was the year that God felt I needed to learn just about every life lesson there is, and now, as we dive full-speed into 2012, I find myself challenged, once again, on very different levels. We will be moving to Houston in June. Kenya will (hopefully) be working full-time while we are there and I will be staying home with my 2 wonderful children. This in and of itself is a challenging concept for me to grasp. I have had a job since I was 16. The thought of staying home all day, in a city where I don't know anyone is a bit overwhelming. I wonder about my parenting skills. Will I be good at raising kids? Because, let's be honest, up til this point I've had a lot of help. My children have spent the majority of most days in someone else's care. Now that they are going to be 100% my responsibility everyday, I can only hope I don't mess them up! We are truly "up-rooting" our little family and sticking it right smack in the middle of everything new. We are very accustomed to having a large family support system just up the street, or right across town. As of June, our closest family will be on the other side of the very large state of Texas. I can't help but wonder what God has to show me over the course of the next year. What I want to say is, "Really, God! It wasn't enough to have us go through the process of major heart surgery on our soon-to-be 4 year-old daughter, but we also need to do it completely removed from all that is safe and familiar to us?" BUT...I refuse to let it beat me. I will not give in to fear, or uncertainty, or frustration. I know that the bigger the challenge placed in front of us, the bigger the opportunity for God to truly do some amazing things in our lives. So, hopefully, 2012 will be the year of new hearts...not only for Kemarah, but for all of us as we witness the amazing works of God and grow closer to HIM.
As I mentioned in my last blog, we are in fact moving to Houston, TX. At the most recent appointment in April, the doctors confirmed the state of Kemarah's sick heart and agreed that the only way to "heal" her would be to give her a new heart. After coming to grips with the fact that this is no cure at all, simply a new set of symptoms that will require new medications and a new way of life for those of us closest to her, I have become almost excited that we are finally moving forward with something. After more than a year of uncertainty, fear, anxiety, and many, many questions, I feel like we finally have some kind of solid answers. Although living with a transplanted organ will be a challenge, it will make my baby feel better, and for all intents and purposes she will be "normal" and able to do all the things a healthy little girl should be able to do.
I feel as though 2011 was the year that God felt I needed to learn just about every life lesson there is, and now, as we dive full-speed into 2012, I find myself challenged, once again, on very different levels. We will be moving to Houston in June. Kenya will (hopefully) be working full-time while we are there and I will be staying home with my 2 wonderful children. This in and of itself is a challenging concept for me to grasp. I have had a job since I was 16. The thought of staying home all day, in a city where I don't know anyone is a bit overwhelming. I wonder about my parenting skills. Will I be good at raising kids? Because, let's be honest, up til this point I've had a lot of help. My children have spent the majority of most days in someone else's care. Now that they are going to be 100% my responsibility everyday, I can only hope I don't mess them up! We are truly "up-rooting" our little family and sticking it right smack in the middle of everything new. We are very accustomed to having a large family support system just up the street, or right across town. As of June, our closest family will be on the other side of the very large state of Texas. I can't help but wonder what God has to show me over the course of the next year. What I want to say is, "Really, God! It wasn't enough to have us go through the process of major heart surgery on our soon-to-be 4 year-old daughter, but we also need to do it completely removed from all that is safe and familiar to us?" BUT...I refuse to let it beat me. I will not give in to fear, or uncertainty, or frustration. I know that the bigger the challenge placed in front of us, the bigger the opportunity for God to truly do some amazing things in our lives. So, hopefully, 2012 will be the year of new hearts...not only for Kemarah, but for all of us as we witness the amazing works of God and grow closer to HIM.
Thursday, March 1, 2012
Blessings
So much has happened since my last blog that I'm not even sure where to begin! After our two trips in December and January, we experienced such a huge outpouring of support and blessings from our family, friends, churches and other parts of the community. It never ceases to amaze me that people we barely know, or don't know at all, take an interest in our lives and in the life of my little baby girl. Kemarah is so blessed to have these people stepping up to offer prayers and support throughout this time in her life. Kemarah was granted a wish from the Make-a-Wish foundation and she wished to go to DisneyWorld and meet the Princesses. Unfortunately, her doctors won't release her to go right now, but after her surgery she will be able to go and have a magical time. Kemarah will be receiving a new heart. There really are no other options available to help her right now and her doctor doesn't want to keep pressing our luck with her current health status. So, we are looking at getting to Houston sometime over the summer so that she can be placed on the transplant list and we can "officially" begin our wait for a new, healthy heart. There are lots of details that are not in place yet, so stay tuned for more info in the future. For now, we love you and continue to appreciate your prayers and support!
Subscribe to:
Comments (Atom)