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