It was like any other day....chaos in the morning trying to get kids dressed, fed and off to school. This day was a little more crazy since I had to be out of the house by 8:30 with the house in tact for a showing later than day and Brooklyn dropped off at the sitters. Today was Chase's pediatric Cardiology appointment that we'd been anticipating for a month.
I had no idea that it would be the 1st day of the rest of my life.
At Chase's 1 year well check, he was a little sick. Everything checked out great, but his pediatrician said she thought she may have heard a murmur in his heart. He was also showing signs of developmental delay so she urged me to schedule 2 appts...pediatric cardiology and an early intervention evaluation. I didn't know yet that these 2 appts would relate to each other.
In the month leading to the cardiology appointment, I thought about the possible murmur from time to time but was reassured when I remembered that his doctor said that 90% of murmurs are no big deal.
It was May 17, 2011 and I took Chase into his pediatrician because he'd had a high fever for a few days. This time we saw a different doctor. He checked him out from head to toe and said it looked like he had the coxsakie virus. Before we left, I told him about the other doc hearing a murmur and asked if he would take a listen to see if he could hear it too. He could. He said it sounded a little different than a typical murmur. He was glad I had already had the appointment for the cardiologist scheduled. It would still be 1 1/2 weeks until that appointment though. On my way home from the doctor, I received a call from the ped card office saying that an early appointment had opened up the following day...so I jumped on it.
The next morning (May 18) we arrived 20 min late to the appointment due to traffic. I hate being late, but I was happy they were still willing to see us. The nurse took Chase's usual vitals.. temperature, blood pressure, etc. He still had a low grade fever from the virus. Then, the nurse took the EKG. We were moved to a different room to meet the doctor. Her name was Dr. Zappalla. She walked in, glanced at Chase, and said..."wow, he looks healthy! I'm sure he's fine. He doesn't look like the typical heart patient we see. Check out those chubby thighs!" I felt reassured. As I held Chase in my lap she listened to his heart with her stethoscope and said, "hmmm, I can't hear it. Let's lay him on the table." After laying him down and listening, she finally heard it. She still thought it was an innocent murmur but decided to order an echo cardiogram just to be safe.
Chase was so calm during the echo. I remember commenting several times just how unusual it was for him to be so still. I took several pictures of him with my phone while he laid there so still.
We were moved back to our room and told to wait for the doctor. Chase and I waited for about 15 minutes. These 15 min were nothing but pure joy for me. He was being so cute. I thought to myself over and over again how cute he was and how much I was enjoying spending alone time with him. In fact, my sister Shanda called and I recall telling her just how much I loved him...at that very moment. I told her how he was at such a fun age and how I wanted to freeze time. Then, my sister Stacy clicked in. I shared with her my same feelings about Chase. I was overwhelmed with love for him and just adored every ounce of him. As I was talking to my sister, Dr. Zappalla walked in.
I had no idea that in that instant, my life would never be the same.
"Okay Mrs. Gregerson, I was not expecting that." My heart stopped. "Your son has hypertrophic cardiomyopathy."
Huh? What's that? How do we fix it?
"You need to get him over to Dupont Children's Hospital and have him admitted right away to start medication. He is at risk for sudden death without it...I'm so sorry."
Chase looked up with me and grinned and my eyes welled up with tears. Dr. Zappalla proceeded to explain to me that he had a thick heart...in all of her medical terminology...blah blah blah. I nodded as she tried to explain it to me but all I could think about was...would he be okay? Could he still live a normal life? I couldn't ask her. I was too afraid. The Dr. then informed me that it was commonly passed down genetically and that Jeff and I and the rest of our kids would have to be tested. It was too much to process. I didn't know what to say. She stepped out to call the hospital to let them know we were coming.
I picked up the phone and called Jeff. I told him his diagnosis and I could hear the worry in his voice. "Have you heard of this condition? Will he be okay?" He sighed in disbelief and then went on to explain to me what he knew about the condition. He explained that he would need to be on medicine for the rest of his life and that we would not be allowed to be active in sports, etc. Tears started to flow harder as I pictured him being Ethan's age and imagining having that conversation with him explaining that he couldn't play sports. How do you explain this to a boy? Then my mind immediately jumped ahead to the age of 19. Would he be able to serve a mission? If his kids have a 50% chance of inheriting it from him, who would marry him? I couldn't stop the tears.
The Dr. apologized again, handed me information about his diagnosis, and sent us on our way. Tears continued to flow as I left the office, went down the elevator, and walked out of the building. I passed several people on my way out..and watched them in conversation carrying on with their life and remember feeling numb inside...like my world had frozen in time. I called my mom as soon as I entered the parking lot and started to ball as I began to explain what I had just learned. We cried together. Neither of us understood why this was happening. I had so many questions.
Jeff came home from work. I put Chase down for a nap as I began packing for the hospital. I immediately went online to start researching his condition. I felt sad for Chase but encouraged as I read that most people with hypertrophic cardiomyopathy (HCM) live long and fulfilling lives. They just have to watch their activity. I told Jeff, "Chase will find other things he enjoys. He might be musical, artistic..or even take up golf."
After making arrangements for my other kids, we headed to Dupont Children's Hospital in Wilmington, DE. Neither of us had ever been there. The Dr. that diagnosed Chase wanted us to go there since she had privileges there and wanted to follow up with us the next morning. We entered the cardiology floor and as we approached the nurse's station, all of the eyes turned towards us. One nurse said, "are you Chase?" How did she know? It was after 2pm, were we the only one's to have an admission that day?
The nurse practitioner introduced herself and then the pediatric cardiologist walked over to us. Jeff started firing questions at him. He asked how severe Chase's case was. The cardiologist said he hadn't looked at Chase's numbers yet but that he knew it was very uncommon for this condition to be diagnosed at such a young age. The nurse practitioner pulled up his numbers on her computer screen to show the cardiologist. I could read her face as she turned the screen for his view. My heart began to beat rapidly. Dr. Tsuda (ped cardiologist) looked at the numbers and his eyes immediately got big. "Well, his case is very severe." I wanted to pass out. What did that mean? I realized I was in over my head. The motherly control freak in me wanted to grab Chase and run...far away...and never let go. I didn't want to hear anymore.
I realized at that moment that the fact that he would not be able to be active was the least of my worries. Questions flooded my mind. Why wasn't this detected before? Can he get better? What about a heart transplant? What does severe mean? Why is this happening to me? To him? He looks fine. He looks perfect. I'm so confused. My heart is breaking.
They checked us into our room and started hooking him up to monitors. I couldn't help but notice that the staff around us seemed happy everywhere else but in our room. They were all somber and kept apologizing to us as they introduced themselves. Why were they apologizing? Chase will be fine, right? What are they not telling me?
Then, Jeff finally asked the question that was weighing on both of our minds. What is the prognosis? The nurse practitioner very delicately explained to us that the prognosis of hypertrophic cardiomyopathy is split into thirds. "1/3 of them (mild cases) go on to live fairly normal lives with mediation and reduced activity..(chase did not fall into this category). 1/3 become eligible for heart transplants, and 1/3 of them we don't speak about."
My heart officially crushed into pieces. The fact that we were even having that conversation was too much to bear. I burst into an all out sob and just cried in disbelief.
Our best case scenario at that moment was that Chase would need a heart transplant. How could this be? When I woke up this morning...today was a normal day. He looks the exact same as he did 3 hours ago. Are they sure they didn't mix up his echo cardiogram with someone else's? It was all happening too fast
Jeff and I held each other as we began the process of coming to grips with our new normal. The nurses began the medication immediately. He started Propranalol (beta blocker) which will help slow down his heart rate and reduce his blood pressure. My baby was only 13 months old and would now need blood pressure medication to stay alive.
Over the course of the next few days, we learned a lot about Chase's condition. Chase has hypertrophic obstructive cardiomyopathy. Click here for info about cardiomyopathy from the CMF foundation. It describes all forms and types of the condition. The thickness surrounding his left ventricle is 13-15 mm. He is at a very high risk of arrhythmia which could cause sudden death at any time. It is a difficult murmur to hear...so the fact that his pediatrician heard it in the 1st place was a miracle. This condition is very rare in babies. Only 5 out of a million are diagnosed. We would then learn that his case is one of the more severe ever seen. There have only been 2 cases seen by the cardiologist treating him at the hospital since he began practicing. His condition is very rare...so there is little research and little that can be done.
The feeling of hopelessness is overwhelming. I would do ANYTHING to trade places with him. I wanted to rip his chest open and trade hearts with him. I had no control over the situation..and it was killing me.
We would also learn that his case will not improve...but only get worse over time. The medicine will help reduce his risk of arrhythmia's or cardiac failure. The next goal is that he will live to be age 2 or 3 so the doctors can implant an internal defibrillator. His little body is too small to implant one now. The risks of the surgery outweigh the benefits. Oh, how I pray with all my might that he can get this internal defibrillator. It would bring me so much peace of mind. Other than the constant medication administered every 6 hours..day and night, external defibrillator is our only other defense right now.
We would learn that his excessive fussiness as a young infant were most likely due to chest pain. For months, we treated him with reflux medicine and were then told that it was probably just "colic." There really was no way of knowing. The only thing that would lead us to a cardiac specialist was to hear a murmur. His developmental delay is most likely due to being weak because his heart was overworking. I was heartbroken when I learned that he had not yet known a life without pain. I had no idea.
Our few days spent in the hospital felt like weeks. They wanted to monitor him to make sure his blood pressure and heart rate didn't slow down too much. Chase hated being there. He was in the hospital for a whole week only 2 months ago for RSV. He didn't seem to mind it then. This time was different. He had a very difficult time sleeping, eating, and adjusting. Some of the side effects of the medicine include dizziness and feeling weak. He could barely sit up on his own in the hospital crib after the 1st 8 hours of treatment.
Mine and Jeff's emotions have been all over the charts. We've cried more tears in the last few days than we've cried in a lifetime. We are beginning to accept that Chase has this condition and now looking forward to the future with faith. This experience was always the scenario that I couldn't spend much time thinking about. When hearing about other's trials (friends or acquaintances) regarding the health of well being of their children, I would cry as I tried to imagine being in their shoes. I just couldn't fathom it. I always felt like Heavenly Father would spare me from having to go through such a trial because surely He must know I am not strong enough. Now that I am "that person" What do I have to learn from this? In the beginning, it was hard to see the blessings that could come from such a devastating blow.
So far, there are endless blessings. Now, more than ever, we are relying on the Savior to carry us through this. Our perspective on life has completely changed. We've always known that family was most important next to the gospel, but now we realize that nothing else really matters. We are approaching one of the biggest transitions in our married lives in 5 weeks when we move our family across the country to Austin, TX. It would have been so easy to get caught up in all of the unimportant things...like granite color, tile vs hardwood, etc. Now, all that matters is our 4 beautiful children. Heavenly Father has a plan for Chase and for our family. Chase is a special and choice son of God. He was placed into our family for a reason and no matter how long or how short he stays with us here on earth, I am forever changed because of him.
I know that Heavenly Father and Jesus are aware of me and my family right now. I can feel my Savior's love around me. Heavenly Father gave His only begotten son so that we could live with him. I can't imagine how hard that must have been knowing that He actually did have the power to stop His son from suffering but knew that Jesus' sacrifice was necessary in order for us to return to Him. I have a greater appreciation for my temple marriage than ever. It brings me peace knowing that no matter what happens, I can live with my family for eternity.
This knowledge doesn't mean this journey will be easy...in fact, I still want to remain in denial that any of it happened to begin with. Life looks different these days...and it will for a while. We have a long road ahead of us. The most important thing...Chase is still with us. He looks great. Even though his heart is sick, I am so glad we caught it before it was too late.
This knowledge is helping me to cope...to pick up the shattered pieces of my heart.
I can do hard things.....
Thursday, May 26, 2011
Posted by shanda at 7:54 AM