Well, it finally came. And it needed to because of the sickness it was bringing me. I never really realized how anxiety can cause true sickness. I have had headaches and a sore throat (maybe allergies), my muscles and veins are super sore all week long.
It, of course being the hospital visit to see Dr. Rosenthal and the team of cardiologists that manage Oliver’s treatment. Everything went super smooth this morning. Even though we all got up really early- Oliver was up and moving around in bed at 4 this morning. I finally gave up on us getting more sleep by 5. We, Tom, Oli and I went downstairs to get our day started.
We left the house just after 7, Oliver in a very happy mood. He asked where we were going and I told him to an appointment. He asked “Me”? I said yes. We left it at that till we pulled up to the hospital, where we saw our HERO, Dr. Perry. He looks great actually with his hair long and scruffy. Kind of like a surfer. We waved and said hi quickly as he walked on.
Steve performed the echo without incident. Oliver and I laid on the hospital bed watching Mickey Mouse while Steve and Tom talked of fishing and heart stuff. He then got a EKG, which was super quick. The only part that bothered him was the removal of the stickers. Oliver got to pick from the big treasure box, now that he is almost 3. What you know, he found a ball. A supremely bouncy and small ball!!! Oh boy that was tricky. We ran into some of his past team, Dr David, Dr. Seth and Dr. Mary. Some of our favorites.
We didnt have to wait long for Dr. Rosenthal and his crew. This is what I got from him (Tom has a slightly different account, which is normal for us). The echo showed 2 things that were not good for Oliver. First the back flow had increased. (not what we want to see) Secondly and more importantly he was alarmed by the fact that his left ventricle has enlarged since the last visit. So what do we do now? First of all we have to make sure that the ventricle is taken care of , if it gets too damaged- it is not repairable this would put Oliver back on the heart transplant list. He is as of today on a blood pressure medication 2x daily called enalapril. This will hopefully reduce his blood pressure, therefore relieving the left ventricle. We will check with an echo and a MRI in 3 months to see if there is any change after taking this med. If this medication works in this manner we hope, we can push out Oliver’s first surgery, which will most likely be open heart Ross procedure. We would then best case scenario have a mechanical valve placement when Oliver reaches the right size which could be about age 12-14. If this med does NOT work, we will need to have surgery within 3-6 months. Our goal is to have the least amount of intervention with Oliver’s heart. That is why we want to push out surgery as long as possible. With that said we also need to make sure that this pressure that his left side is feeling does do enough damage that it would lead to severe heart problems in the next 10-20 years.
I got alot out of this meeting. I now understand that Oliver will continue to look great from the outside even without any intervention for the next couple of years, BUT, we wont know the irreversable damage that sitting back will do to left ventricle until later on. With that, I now believe that our doctors are right in saying that Oliver has severe heart issues. I also know that Oliver can overcome all obstacles. He is a fighter with a will to live, strive and achieve more than is explainable.
Please help us to pray that this medication will give his body the power to reduce his ventricle to good size for his body. That he continue to grow big and strong and healthy.
At Disneyland a few weeks ago a ride attendant told Oliver, “You are not big enough to get on these bumper cars”. A week or so later, Oliver says to me, “Mom, I’m BIG” ~ I said Yes you are! Oliver has gained 1.5 lbs in the last 3 months! Way to go Big Boy! Love You!!!!
