Update on Jalen
On behalf of the entire Kimmel family, let me say thank you for all of your prayers, thoughts, and well wishes. March 24, 2014, was anything than the day we had anticipated. At the end of the day, while very emotional and exhausted, we are very blessed with the decisions the doctors and surgeons made.
Jalen was to have had her third open heart surgery. The procedure scheduled was to replace her mitral valve to eliminate the need to regulate her heart rate when she is active. When her heart rate rises above 120 beats per minute (bpm), Jalen begins to experience symptoms not uncommon of those suffering the onset of heart attacks. It is believed that her mitral valve is restricting blood flow through the aortic valve, which supplies blood to the rest of the body.
Prior to Jalen being prepared for surgery, her surgeon came in to visit. He told us that before any surgical procedures were to be completed, a 3-D trans-esophageal echocardiogram (TEE) would be performed. The TEE is a type of sonogram that is completed by guiding a scope down the throat to provide extremely close ultrasound photos of the heart. The TEE is completed under general anesthesia. A chief of one of the departments happened to be reviewing Jalen’s case over the weekend and wanted the TEE to be completed before the mitral valve replacement procedure began. The chief is an expert at reviewing these types of photos and videos and we were told was instrumental to the development of the 3-D technology. Nurses finished preparing Jalen for surgery, we gave final hugs and kisses, and Jalen was wheeled away.
We were told that we should be receiving updates every forty-five minutes to one hour. Almost two hours had passed before we received our first and only update. It was Jalen’s cardiologist and surgeon, not a nurse as we had expected. Charlene and I, along with the doctors, entered a small conference room. Doctors were quick to tell us that Jalen was fine but there had been a change in plans; the reason for meeting was to inform us of their findings from the photos produced during the TEE.
During the last ninety minutes, over 100 years of experience, gathered around monitors and the newest photos of Jalen’s mitral valve and heart. Photos of her mitral valve appeared to be healthy and new details showed something else was causing the concern; surgeons would not be moving forward with a valve replacement at this time. Photos from the TEE showed what appears to be excess tissue or strands between her mitral and aortic valves, which should not be present and is believed to be the true culprit of Jalen's situation. Surgeons are puzzled as to how they should proceed.
Keep in mind, the heart is an extremely complex organ. It is not as simple as entering a chamber and removing the tissue. This tissue lies extremely close to the carotid artery, therefore, removing it and installing a mechanical valve poses to be an extremely challenging procedure. If surgeons leave the tissue and replace the valve, it could mean her current situation would not change; possibly leading to a forth surgery which would mean that scarring from the third surgery would limit visibility in an extremely sensitive part of Jalen’s heart.
How do you feel about the decision? We feel that holding off on the surgery was the appropriate decision. Agreeing with the doctors was the easy part. The hard part was holding our baby girl as she broke down in tears as we told her for the second time in two years that she is waking up without the issue being resolved.
How is Jalen? Jalen is doing well. We consoled her yesterday, but the gravity of the situation did not take its complete toll until this morning, after the remaining anesthesia had worn off. She is a trooper and strong in her faith, so she knows that there is a reason for the outcome. Jalen wants to find a solution quickly.
How is her brother, Ethen? He is doing well and showing her great support. He hates to see his sister going through this. He has been a great big brother! He, as many young men, hate to show emotion, so when he does, he does it out of love.
How are Charlene and Randy? We are fine. When going through something like this, we have to mentally and physically prepare for the aftermath of surgery. So much energy goes in to preparing for an event such as this that when they released Jalen we came home and fell asleep in the living room floor for a while! Yes, we have a number of questions. Yes, we are frustrated. Most importantly, we know that God created Jalen and He knows the details of how she is made. Most importantly, we trust that God will give doctors the wisdom to help Jalen (Proverbs 3:5). Through it all, we are glad that the doctors were honest and courageous to tell us they were not moving forward. We were blessed that another specialist questioned the findings of her previous tests.
What can we do? Honestly, we ask that you follow the instructions in 1 Thessalonians 5:17, pray without ceasing. Pray for wisdom for the doctors. Pray for continued healing and strength for Jalen. Pray for other children that have heart conditions. Jalen will be collecting large teddy bears and button front pajamas for those children that need open heart surgeries. The bears are used to hug when children cough to keep their lungs healthy after surgery; hugging the bears helps to ease the pain. The buttoned pajamas allow the children to be comfortable without raising their arms to put on t-shirts. You can message me at www.facebook.com/rjkimmel .
What’s next? Jalen’s case will be sent to various experts on the east and west coast for review. A biopsy will be completed to determine if the heart muscle is diseased, which doctors strongly feel it is not, but they want to be certain. An MRI will be completed to determine the makeup of the space between her mitral and aortic valve. Jalen will find new ways to regulate her heart rate during activities until a solution is found.
Again, we cannot thank you enough for being with us on this journey. We are so thankful and blessed to have the doctors and surgeons. God works in wonderful ways, and we know that He is in control of her unique situation. God is good…
