Wish Upon A Star

When Jensen was 2 days old, he underwent his first open-heart surgery. This proved to be far more difficult than anyone anticipated and he ended up on an advanced form of life-support. The cardiac team worked tirelessly for weeks to save his life. He suffered many complications during this time, including seizures and brain bleeds. Despite all of the traumatic events during the first two months of his life, he was finally able to leave the hospital! Caring for him at home was stressful because he required medications very frequently, was dependent on a feeding-tube, had multiple doctor appointments each week and was medically fragile. Something as simple as a common cold could have been fatal to him during this time. 

 

When Jensen was 4 months old, the family flew back to Philadelphia so Jensen could have a second stage of open-heart surgery. Once again, this surgery did not go as planned and Jensen ended up with many complications. Due to the extreme difficulty of the surgery, Jensen had multiple seizures, brain bleeds, and a severe stroke that damaged much of the right side of his brain. This was devastating news. Jensen’s neurologist explained that his memory and muscle strength would likely be among the functions that would be affected by his stroke. No one knew exactly how Jensen would be affected, only time would tell. Jensen’s recovery from this stage was slow and difficult. After a few rocky weeks in the hospital, Jensen was able to go back home. 

 

During this time he worked extensively with speech, occupational, and physical therapy. His developmental milestones were delayed but he was proving to be resilient! He was no longer on a feeding tube and was able to wean off of several of his medications. The family did have to take him back to CHOP for cardiac catheterizations for “tune ups” for his heart every few months. Usually they knew he needed a “tune up” because he was more fatigued than usual, had blue skin, or his oxygen levels were low. However, he did remarkably well during this time and was able to grow and continue his development. 

 

When Jensen was 2 years old, they once again flew to Philadelphia for another stage of open-heart surgery. During this time, he understood more about what was going on around him and was very anxious about being in the hospital. This added another layer of difficulty to this surgery. Jensen had some complications during this surgery but it went far better than we expected. Jensen was so brave that he was able to take a few steps only 24 hours after surgery. His determination and resilience helped him to recovery. He was back home only 2 weeks after open-heart surgery! 

 

Since then, Jensen has continued to work very hard in therapies to catch up to other kids his age. He struggles with the effects of the brain damage he endured daily. His memory, anxiety, executive functioning and attention are all affected by the neurological complications. Jensen also struggles with PTSD due to the extreme trauma he has endured during his surgeries, hospitalizations, doctor’s appointments and frequent medical procedures.

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