I figured that I would give everyone an update on Cam since that is why you are all reading this.
On Friday, March 28th we had Cam's first cardiology appointment since his diagnosis. And let me tell you, I had anxiety about this appointment all week long. I was so scared his disease was going to worsen and he was going to be hospitalized again. Of course I let my fears and worries get the best of me. Cam's doctor was very pleased with the progress he was making with the propanolol. His heart rate was 117, pulse ox was 100%, and he had a normal EKG. After the doctor came in and did the echo she said that his septum wall was still measuring 1.7cm and his gradient reading was anywhere from 54% to 77% for the duration of the echo but she did not want us to focus on the gradient as it changes so frequently.
In case you are having a hard time following, all of this is GOOD NEWS!! I was glad to hear my fears were just that, fears. However, leaving his appointment I expected to feel much better than I did. I still had knots in my stomach like something, I have no clue what, but something was wrong. Maybe it's just me wishing for a miracle, maybe it's me still thinking about the worst, or maybe I will feel this way for the rest of my life...either way, it wasn't a feeling I expected.
Cam has an appointment with the team at Texas Children's Hospital tomorrow, April 1, and I find myself feeling all of the anxiety I felt last week. We are finally getting to meet with the experts and hear what they have to say about Camden's condition. I am worried sick that they are going to tell us it is a lot worse than we are thinking. Even though every other doctor has told us he is doing great, I am still worried sick.
I am hoping for the best tomorrow. We have a long day ahead of us tomorrow with driving to Houston, and at least a 3 hour appointment with the doctors running all kinds of tests on Camden. I hope my baby has a great day, I hope Sean and I are strong enough for each other, and I hope the doctors are able to answer all of our questions.
For now I sit, and wait, and worry...
--Heart Warrior Momma
Monday, March 31, 2014
Thursday, March 27, 2014
I just don't get it...
I have never been a woman of extreme faith, nor have I ever claimed or pretended to be.
I grew up in a church, was baptized, went to youth group, and on many mission trips....but after I graduated high school, I think I went to church maybe 10 times? I have never felt "religious". I have always questioned my faith and tried to find where I fit in that scale.
On the day of Camden's diagnosis, after the initial shock and utter disbelief had worn off, I was angry....pissed even. Angry at the doctors for not catching this sooner, angry at myself for possibly giving him this disease, but the most angry at God. If there was such a thing as God, how in the world could he allow such a horrible disease? And why in the hell did my son, MY BABY, have to get it?!?! I could not, and still can't, wrap my mind around it.
Why does a perfectly innocent child have to have such a horrible thing happen to them when there are terrible people in the world that are perfectly healthy?!?! I don't get it...it doesn't make sense and it isn't fair. (please spare me the "life's not fair" speech)
I have asked so many people for prayers because it seems like the right thing to say, but does that even matter? Why pray to something and someone that did this to my baby? Once again, I just don't get it.
I am trying not to hold onto my anger, but it's proving to be rather difficult. I can hold it together in front of people but on my drives to and from work is where it gets messy. I yell and scream at God. I cry. I curse him. I hurt. And I am angry. Angry that my child has this disease, angry that this will be with him for the rest of his life, angry that there are no answers to our questions. Just plain angry. And still, I just don't get it.
--Heart Warrior Momma
I grew up in a church, was baptized, went to youth group, and on many mission trips....but after I graduated high school, I think I went to church maybe 10 times? I have never felt "religious". I have always questioned my faith and tried to find where I fit in that scale.
On the day of Camden's diagnosis, after the initial shock and utter disbelief had worn off, I was angry....pissed even. Angry at the doctors for not catching this sooner, angry at myself for possibly giving him this disease, but the most angry at God. If there was such a thing as God, how in the world could he allow such a horrible disease? And why in the hell did my son, MY BABY, have to get it?!?! I could not, and still can't, wrap my mind around it.
Why does a perfectly innocent child have to have such a horrible thing happen to them when there are terrible people in the world that are perfectly healthy?!?! I don't get it...it doesn't make sense and it isn't fair. (please spare me the "life's not fair" speech)
I have asked so many people for prayers because it seems like the right thing to say, but does that even matter? Why pray to something and someone that did this to my baby? Once again, I just don't get it.
I am trying not to hold onto my anger, but it's proving to be rather difficult. I can hold it together in front of people but on my drives to and from work is where it gets messy. I yell and scream at God. I cry. I curse him. I hurt. And I am angry. Angry that my child has this disease, angry that this will be with him for the rest of his life, angry that there are no answers to our questions. Just plain angry. And still, I just don't get it.
--Heart Warrior Momma
Sunday, March 23, 2014
What can I do??
Since Camden's diagnosis everyone has been so loving, warm, and consoling. We have received many calls, texts, messages, comments, and visits. The way people open up and show compassion when your world is knocked on end is amazing to me and we appreciate every bit of it...but there is something that irks me to no end.
Upon hearing the news about Cam, most people's response has been "Oh my!! I am so sorry...." And my thoughts on that are, Why? Why are YOU sorry? Did you give my son this disease? Did you wish this upon my family? Of course not! You say sorry when YOU have done something...
I'm sorry I broke your lamp.
I'm sorry I spilt wine on your couch.
I'm sorry I ruined your favorite shirt.
YOU caused those events so you should say you're sorry. You don't say you are sorry when you find out my son has heart disease.
At the end of their "I'm so sorry" comment, people say "Let me know if there is anything I can do." So, here is what you all can do.
STOP BEING SORRY!
Plain and simple. There is no need to be sorry for us. Instead, be thankful.
Thankful Cam's pediatrician didn't just wait it out
Thankful we found his diagnosis so young
Thankful he has not been affected by all of this
Thankful the beta blockers are working
Thankful we have an AMAZING family to help us through it all
Cam is a fighter and we will all get through this, but we won't get through it by people feeling sorry for us. We will get it through it by being thankful he is a happy, healthy baby boy.
Lift Cam up in prayer daily and thank the Lord he is healthy in every other way possible. And next time something major happens to someone, think twice before saying "I'm sorry..."
---Heart Warrior Momma
Upon hearing the news about Cam, most people's response has been "Oh my!! I am so sorry...." And my thoughts on that are, Why? Why are YOU sorry? Did you give my son this disease? Did you wish this upon my family? Of course not! You say sorry when YOU have done something...
I'm sorry I broke your lamp.
I'm sorry I spilt wine on your couch.
I'm sorry I ruined your favorite shirt.
YOU caused those events so you should say you're sorry. You don't say you are sorry when you find out my son has heart disease.
At the end of their "I'm so sorry" comment, people say "Let me know if there is anything I can do." So, here is what you all can do.
STOP BEING SORRY!
Plain and simple. There is no need to be sorry for us. Instead, be thankful.
Thankful Cam's pediatrician didn't just wait it out
Thankful we found his diagnosis so young
Thankful he has not been affected by all of this
Thankful the beta blockers are working
Thankful we have an AMAZING family to help us through it all
Cam is a fighter and we will all get through this, but we won't get through it by people feeling sorry for us. We will get it through it by being thankful he is a happy, healthy baby boy.
Lift Cam up in prayer daily and thank the Lord he is healthy in every other way possible. And next time something major happens to someone, think twice before saying "I'm sorry..."
---Heart Warrior Momma
Sunday, March 16, 2014
Words
Heart disease
Severe
Hypertrophic cardiomyopathy
HCM
Beta blockers
Surgery
Surgical myectomy
Heart transplant
Cardiac arrest
These are words I never thought would be a part of our lives...of my son's life... my 6 MONTH OLD'S life!! Unfortunately I have had to familiarize myself with these heartbreaking words. While some of them are not what we are facing at this particular moment, they are possible and part of this disease. Even as I typed some of them my hands were trembling, my heart was racing, and tears are welling up in my eyes. I still can't even say them all without crying. These words are now a part of our lives...and scary as they may be, they are our reality. I am going to try and describe these words to you so that you may better understand our little man's condition.
Heart disease- Cam's poor heart is not well. We are so blessed that this disease has not stunted his growth or development. The fact that his heart is so incredibly diseased and that it has had no adverse affect on him at all is amazing. This helps me find comfort.
Severe- His condition is bad...not the worst it could be, but it is bad. This by no means is a death sentence, please understand that, it is just something that must be monitored closely.
Hypertrophic cardiomyopathy- This is the name of Camden's disease. Basically his heart is too strong...
Beta Blockers- These are used to slow the heart rate down to allow for the left ventricle to fill up with as much blood as possible and then forcefully shoot that blood into the aorta...just as taking slow, deep breaths allows for oxygen to get to the rest of the body. Camden is currently on 5.5mg of propranolol and is doing great!! The cardiologist eventually hopes to up his dosage to 8 mg.
Surgery- the possibility of surgery is there, but it is not something we are to focus on. It is just something I have to mentally prepare for in case we do get to that point.
Surgical myectomy- This is a procedure where they go in and scrape off some of the muscle. The cardiologist assured me that we are not going in that direction right now, but should his muscle thicken, it is something we will have to consider. Part of me wants to have this procedure done for my piece of mind...it allows the left ventricle to fill up with more blood, and doesn't make the heart work so hard.
Heart transplant- WE ARE NOT HERE!! But, many people with HCM do get heart transplants. I have a hard time with this because if my baby does need a heart transplant then that means I have to pray for someone else to lose their baby and as a mother, I would never wish that on anyone.
Cardiac arrest- This is the scariest of all these words to me...the possibility that my baby could go into cardiac arrest. The good thing is that the beta blockers will not allow his heart to reach a dangerous point...but the thought of "what if" is in the back of my mind every single day
Words. Scary words. New words. All of these words are now a part of my life, Sean's life, Camden's life, our families lives and while they are very scary, it is important to be educated and prepared for all of them.
Camden has shown us how strong he is from day 1, basically holding his head up from the day he was born and now his strength is more important than ever. They call kids with this disease "Heart Warriors" and I think that is perfectly fitting for my little fighter
--Heart Warrior Momma
Severe
Hypertrophic cardiomyopathy
HCM
Beta blockers
Surgery
Surgical myectomy
Heart transplant
Cardiac arrest
These are words I never thought would be a part of our lives...of my son's life... my 6 MONTH OLD'S life!! Unfortunately I have had to familiarize myself with these heartbreaking words. While some of them are not what we are facing at this particular moment, they are possible and part of this disease. Even as I typed some of them my hands were trembling, my heart was racing, and tears are welling up in my eyes. I still can't even say them all without crying. These words are now a part of our lives...and scary as they may be, they are our reality. I am going to try and describe these words to you so that you may better understand our little man's condition.
Heart disease- Cam's poor heart is not well. We are so blessed that this disease has not stunted his growth or development. The fact that his heart is so incredibly diseased and that it has had no adverse affect on him at all is amazing. This helps me find comfort.
Severe- His condition is bad...not the worst it could be, but it is bad. This by no means is a death sentence, please understand that, it is just something that must be monitored closely.
Hypertrophic cardiomyopathy- This is the name of Camden's disease. Basically his heart is too strong...
Above is a picture of two hearts, on the left is a "healthy" or "normal" heart and on the right is a hypertrophied heart. As you can see, the muscle on the right is much larger...aka too strong. Because the muscle is too large, it does not allow for the lower left ventricle (the lower side of the heart on the right) to fill completely up with blood and push it through the aorta to the rest of the body.
- This is what amazes me about Camden: According to his cardiologist, the thickness of the septum muscle (the muscle between the two ventricles) is "normally" 6 mm...when they did the echo, they found that the thickness of Cam's septum muscles is 17 mm!! Almost 3 times the size it should be! Hearing that was originally very scary, but to think about how well he has developed, how much he has thrived, and his ability to constantly be on the go with his heart performing so shitty completely amazes me!
Beta Blockers- These are used to slow the heart rate down to allow for the left ventricle to fill up with as much blood as possible and then forcefully shoot that blood into the aorta...just as taking slow, deep breaths allows for oxygen to get to the rest of the body. Camden is currently on 5.5mg of propranolol and is doing great!! The cardiologist eventually hopes to up his dosage to 8 mg.
Surgery- the possibility of surgery is there, but it is not something we are to focus on. It is just something I have to mentally prepare for in case we do get to that point.
Surgical myectomy- This is a procedure where they go in and scrape off some of the muscle. The cardiologist assured me that we are not going in that direction right now, but should his muscle thicken, it is something we will have to consider. Part of me wants to have this procedure done for my piece of mind...it allows the left ventricle to fill up with more blood, and doesn't make the heart work so hard.
Heart transplant- WE ARE NOT HERE!! But, many people with HCM do get heart transplants. I have a hard time with this because if my baby does need a heart transplant then that means I have to pray for someone else to lose their baby and as a mother, I would never wish that on anyone.
Cardiac arrest- This is the scariest of all these words to me...the possibility that my baby could go into cardiac arrest. The good thing is that the beta blockers will not allow his heart to reach a dangerous point...but the thought of "what if" is in the back of my mind every single day
- Because this is a possibility we all asked to be trained in infant CPR. Now, I have had CPR training before as I have worked with kids for quite a few years, however when it came time to demonstrate that we knew how to perform CPR on the infant doll, I lost it. I had never imagined I would have to think about doing this on my baby boy. This was a very hard experience for me to get through in the hospital...thank goodness for the support of my family!
Words. Scary words. New words. All of these words are now a part of my life, Sean's life, Camden's life, our families lives and while they are very scary, it is important to be educated and prepared for all of them.
Camden has shown us how strong he is from day 1, basically holding his head up from the day he was born and now his strength is more important than ever. They call kids with this disease "Heart Warriors" and I think that is perfectly fitting for my little fighter
--Heart Warrior Momma
Saturday, March 15, 2014
The day my world stopped
I have never done this blogging thing before, but since Camden's diagnosis I have needed write down my thoughts, feelings, and fears. So I have decided to keep this blog so everyone can be aware of his story, and our journey through this terrible disease.
In order to share Camden's story, it's important to start from the beginning.
Camden had a cough for a while, I thought it was because he had just learned to crawl around and was now in closer contact with the pet hair and the allergens in the carpet. His cough got worse so my fiancé took him to the doctor and they said it was normal and would go away on its own. One week later I felt like something wasn't right so I decided to take him back to the doctor and insist that they now convince ME, momma, that he was ok...that was on Valentine's Day. The doctor (not his normal pediatrician) was doing his exam and lingered a bit longer on his heart. He asked me if Camden had ever been diagnosed with a heart murmur. Of course I said no, and he assured me that it was probably nothing, it sounded to him like a VSD murmur but just to be safe he recommended that we see a cardiologist to get it checked out. I freaked of course, but we went on with the appointment. He decided that Cam was wheezing and it might be asthma so he put him on a nebulizer. I left the doctor office and immediately called my fiancé crying. I was so scared. I then proceeded to call my mom, his mom, and my sister. All of whom assured me that Cam would be ok. There are TONS of babies that have heart murmurs and they usually close up by 2 years old. My fiancé had a VSD murmur when he was younger and it closed up by the time he was 12 with no complications so I calmed down a bit. We called the list of recommended doctors and the earliest any of them could get us in was March 12!! Talk about a freaked out momma...I'm impatient to begin with but now that the possibility of my son having a heart murmur is on the table I was 10x more impatient!!
SO... fast forward to Wednesday, March 12 and we are at the cardiologist appointment. They did the initial check up and didn't see anything wrong, his pulse ox was 100% and even his EKG was perfectly normal!! Camden was the epitome of a perfectly happy, healthy 6 month old baby boy!! The cardiologist came in and listened to his heart and agreed that it was probably a VSD murmur but wanted to do an echo just to be sure. THANK GOD HE DID!! Once the echo was over, it took quite a while for him to come back in the room and I knew right then and there that something was wrong. As soon as the doctor entered the room, you could see it on his face....he said "I am so sorry, but Camden has sever heart disease" I know he kept going but I honestly cannot remember anything else he said. Luckily I had my mom and fiancé there with me... I asked what we do next and the doctor said that since he is so severe that he has to be admitted to the hospital immediately. We weren't allowed to take Cam to the hospital by ourselves....we had to wait for the ambulance to get there. The doctor told me he would be put on beta blockers and monitored for at least 24 hours and that if they didn't work that we would be transported to Houston for surgery. I WAS SCARED SHITLESS!! I thought " there is NO WAY this is happening to MY son!! This is the kind of stuff you read about or see movies on Lifetime about...no way in hell this is real!" I still had really no clue about this disease that had been diagnosed and was so confused. When we got to the hospital they put Camden on 4mg of propranolol 3xday with the hopes of increasing his dosage. We were told the next day that the propranolol was doing its job and his heart rate was decreasing well with no side effects...the cardiologist came in and told us that she wanted to do another echo on Friday to give the propranolol more time to do its job and upped his dosage to 5 mg 3xday. During the echo on Friday I had her explain everything to me. She told me his original gradient from the first echo was 100 and he was now down to 47...YAY!! We were all so relieved....then she dropped the bad news on us. His septum muscle was at 17mm. I wasn't quite sure how bad it was until she told me that a normal heart has a septum thickness of 6 mm. I felt like my whole world fell apart all over again. Even with the excellent news of the gradient decrease, I could only focus on the negative. Luckily, Camden was doing so well they had no problem with sending us home later that day. They upped his propranolol to 5.5 mg 3xday and we are set to go back to his cardiologist in two weeks. Because he is so severe and they aren't very equipped to treat him in San Antonio, should he get worse, there is a team of doctors in Houston at Texas Children's Hospital (TCH) heading up his case. We have to schedule an appointment to meet with them so they can do some tests and we can familiarize ourselves with the facility.
I am having the hardest time still wrapping my mind around all of this. And I am still unsure of how to deal with it...I have cried every single day since he was diagnosed and not sure if the day will come when I don't cry.
For now I will hold on to the fact that my beautiful baby boy does not seem to let his disease slow him down. He is still the happy, healthy, active little monkey we know. It's crazy how I have learned so much from HIM in the past couple days...
--The Heart Warrior Momma
In order to share Camden's story, it's important to start from the beginning.
Camden had a cough for a while, I thought it was because he had just learned to crawl around and was now in closer contact with the pet hair and the allergens in the carpet. His cough got worse so my fiancé took him to the doctor and they said it was normal and would go away on its own. One week later I felt like something wasn't right so I decided to take him back to the doctor and insist that they now convince ME, momma, that he was ok...that was on Valentine's Day. The doctor (not his normal pediatrician) was doing his exam and lingered a bit longer on his heart. He asked me if Camden had ever been diagnosed with a heart murmur. Of course I said no, and he assured me that it was probably nothing, it sounded to him like a VSD murmur but just to be safe he recommended that we see a cardiologist to get it checked out. I freaked of course, but we went on with the appointment. He decided that Cam was wheezing and it might be asthma so he put him on a nebulizer. I left the doctor office and immediately called my fiancé crying. I was so scared. I then proceeded to call my mom, his mom, and my sister. All of whom assured me that Cam would be ok. There are TONS of babies that have heart murmurs and they usually close up by 2 years old. My fiancé had a VSD murmur when he was younger and it closed up by the time he was 12 with no complications so I calmed down a bit. We called the list of recommended doctors and the earliest any of them could get us in was March 12!! Talk about a freaked out momma...I'm impatient to begin with but now that the possibility of my son having a heart murmur is on the table I was 10x more impatient!!
SO... fast forward to Wednesday, March 12 and we are at the cardiologist appointment. They did the initial check up and didn't see anything wrong, his pulse ox was 100% and even his EKG was perfectly normal!! Camden was the epitome of a perfectly happy, healthy 6 month old baby boy!! The cardiologist came in and listened to his heart and agreed that it was probably a VSD murmur but wanted to do an echo just to be sure. THANK GOD HE DID!! Once the echo was over, it took quite a while for him to come back in the room and I knew right then and there that something was wrong. As soon as the doctor entered the room, you could see it on his face....he said "I am so sorry, but Camden has sever heart disease" I know he kept going but I honestly cannot remember anything else he said. Luckily I had my mom and fiancé there with me... I asked what we do next and the doctor said that since he is so severe that he has to be admitted to the hospital immediately. We weren't allowed to take Cam to the hospital by ourselves....we had to wait for the ambulance to get there. The doctor told me he would be put on beta blockers and monitored for at least 24 hours and that if they didn't work that we would be transported to Houston for surgery. I WAS SCARED SHITLESS!! I thought " there is NO WAY this is happening to MY son!! This is the kind of stuff you read about or see movies on Lifetime about...no way in hell this is real!" I still had really no clue about this disease that had been diagnosed and was so confused. When we got to the hospital they put Camden on 4mg of propranolol 3xday with the hopes of increasing his dosage. We were told the next day that the propranolol was doing its job and his heart rate was decreasing well with no side effects...the cardiologist came in and told us that she wanted to do another echo on Friday to give the propranolol more time to do its job and upped his dosage to 5 mg 3xday. During the echo on Friday I had her explain everything to me. She told me his original gradient from the first echo was 100 and he was now down to 47...YAY!! We were all so relieved....then she dropped the bad news on us. His septum muscle was at 17mm. I wasn't quite sure how bad it was until she told me that a normal heart has a septum thickness of 6 mm. I felt like my whole world fell apart all over again. Even with the excellent news of the gradient decrease, I could only focus on the negative. Luckily, Camden was doing so well they had no problem with sending us home later that day. They upped his propranolol to 5.5 mg 3xday and we are set to go back to his cardiologist in two weeks. Because he is so severe and they aren't very equipped to treat him in San Antonio, should he get worse, there is a team of doctors in Houston at Texas Children's Hospital (TCH) heading up his case. We have to schedule an appointment to meet with them so they can do some tests and we can familiarize ourselves with the facility.
I am having the hardest time still wrapping my mind around all of this. And I am still unsure of how to deal with it...I have cried every single day since he was diagnosed and not sure if the day will come when I don't cry.
For now I will hold on to the fact that my beautiful baby boy does not seem to let his disease slow him down. He is still the happy, healthy, active little monkey we know. It's crazy how I have learned so much from HIM in the past couple days...
--The Heart Warrior Momma
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