It was our 3rd time heading to Texas Children's hospital for our much anticipated annual appointment with the Cardiomyopathy team. Did the usual...farm out other children to amazing, willing families, book a hotel on Priceline near the hospital, 3 hour drive up after a long day at work, school with just me, Jeff and Chase. Little sleep the night before the appointment...wondering how I would react to yet another reminder of Chase's grim future. Jeff and I always enjoy that special time alone with Chase. This year was the first year we didn't need to haul a stroller with us. It was also the first year we could talk to Chase about what to expect at the doctor and actually have him grasp what was coming. My alarm went off and it was time to get ready to head to the hospital.
About a 1/2 hour into our visit, I had realized it was like every other year. Long wait in the waiting room, watching other patients wait for their name to be called as I wondered what their stories were. Somehow I felt connected to each of these parents, without even knowing who they were. They were most likely there for the same reason as I was...hoping for a miracle. Hoping that they would get good news about their child's heart. Tuesday's at the Texas Children's Heart Center were Cardiomyopathy clinic days. They see children from all over the world with different types of heart conditions and have their entire team of cardiomyopathy specialists working together all on the same floor. Chase's name was called. It was finally our turn.
For the most part, Chase has always been remarkably cooperative at all types of doctor's visits. Especially his heart visits. I think this is partly because he has had nearly 15 echo's/ekg's in the last 2 1/2 years. The nurse handed him a lollipop as they laid him on the table to begin his echo. They dimmed the lights, put on a cartoon (which Chase never pays attention to for some reason) and began the exam. This is the part of the series of tests that scares me the most.
Next...an EKG and visit with the doctor. The nurse came in first, asked some questions about how Chase has been over the last year. We didn't have anything too remarkable to report, which is a good thing in his case. Talked a little bit about my dad's recent scary heart incident (that's a crazy story by the way) and the nurse left.
Now for the miracle:
A little over 2 1/2 years ago, doctor's initially told us we'd be lucky if we saw Chase's 5th birthday. A week later, a team that specialized in Chase's condition had a more positive outlook. They gave us more hope, stating that with current medical interventions, he may be able to live longer than what we were initially told...maybe even through his teenage years. They told us it would be a long and rocky road and that he would likely need several surgeries (including an implantable defibrillator). They also told us that with each visit, his septum would continue to thicken, the obstruction would likely get worse and asked us to prepare for the possibility of witnessing Chase passing out with activity. They even said he was at high risk for cardiac arrhythmia's and even sudden cardiac arrest. Due to the obstruction in his septum, the doctors told us Chase had to avoid any type of activity that would induce adrenaline release. So, any chance of participating in competitive sports, roller coasters, and even participating in PE was not a possibility for Chase. That includes swimming, tennis, basketball, baseball, etc. The thought of having to tell my little boy that he couldn't participate in the things that his older brother participates in haunted me, daily. Yes, he is only 3 now but soon he will be 4, and eventually 6, 7. How would I ever have this conversation with him? "I'm sorry, Chase, but you can't play basketball. But why mom? Because if you do, you could collapse and die..." I know, sounds so morbid and of course that's not exactly what I would say, but it was the truth. The unknown of when, where, and would I even be by his side when he did collapse so I could save him. These constant fears literally ate me alive.
Well, our miracle came when the pediatric cardiologist sat us down and told us that Chase's heart was somehow improving. At age 1, when Chase was diagnosed with Hypertrophic Obstructive Cardiomyopathy, they classified his condition as moderate to severe. His septal thickness was more than 12 standard deviations from a normal size heart for his age. Yesterday (at age 3 1/2), his septal thickness was LESS THAN ONE standard deviation from normal. In essence, his heart at this moment is only slightly thickened in a couple of spots. In fact, his measurements would classify his heart as almost normal. They downgraded the severity of his condition from severe/moderate down to mild.
Once I picked up my jaw off the floor, questions started flooding my mind. How did this happen? Are you sure? Can this happen? What does this mean for Chase? His future? But they told us it could only get worse.... that the best case scenario is no change to his heart? Are you telling me this is a miracle?
Well, I am here to tell the world, Yes! Miracles happen! Prayers are answered. The doctor seemed just as perplexed and surprised as we were. He had no explanation. He proceeded to tell me that not only has Chase's heart function improved, but there is zero notable obstruction. He then said that we did not need to increase the dose of his beta blocker and that he was cleared from physical restrictions. He could now participate in swimming, running, maybe even some t-ball. In fact, he even said we didn't need to have Chase follow up with a cardiologist for an entire year. I was thrilled beyond belief! After a long conversation, a lot of questions and answers and some reassuring, we shook hands with the doc and he walked out of the room. My eyes welled up with tears. I couldn't quite process what had just happened. Jeff was in disbelief too. We both just looked at each other, stunned...not quite sure how to react to what had just happened. Could I actually exhale for the first time in 2 1/2 years? I grabbed Chase, hugged him, hugged Jeff and tried to fight back the tears. Many silent prayers were said those few moments later.
We couldn't contain our excitement for the 3 hour drive home. We talked about all of the possibilities in our near future. We talked about scheduling a snow ski trip next year and how awesome it would be that Chase could participate with us. We called close family members to share the news and cried with them as they shared in our excitement. We couldn't wait to tell our other kids.
Ethan, Hayley & Brooklyn...oh my how I wish I had an ounce of their faith. For the last 944 days, you would hear each one of them utter the words in a prayer, "please bless that Chay Chay's heart will feel better." As Chase learned to talk and say the dinner prayer, he would bless the food, the wall, the plates, and every item he could see in front of him but the second he tried to end his prayer, one of his sisters or bother would quietly interrupt him and say, "Don't forget to bless that your heart gets better." It was just so sweet.
Last night, within seconds of walking in the door together as a family, we gathered all 4 of the kids around us and told them we wanted to talk to them about Chase's appointment. Ethan, Hayley & Brooklyn's eyes filled with fear so I quickly uttered: "You know how you've been praying every day that Chase's heart would get better? Well, your prayers worked! Heavenly Father answered every one of your prayers because his heart IS better. Thank you so much for your faith." Their eyes began to water and we threw our arms around each other and had the tightest family hug I can remember.
At that moment, I knew that we had a Christmas miracle of our own. I am so grateful to my Heavenly Father for this miracle.
Chase is far from out of the woods and things could change at any time, but for now...I will just relish....