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On January 22, we took Daniel to an Urgent Care with what we thought was a bad cold. After three hours of tests, suctioning, and oxygen treatments, Daniel was being prepared for transport to Cook Children’s Hospital in Fort Worth because his oxygen levels were too low. Once the EMTs arrived, we learned that he tested positive for RSV and a heart murmur was found. Daniel spent the rest of the day in tests at Cook Children’s and we discovered the source of the murmur was a hole in his heart, specifically a moderately-sized Ventricular Septal Defect (VSD).
The next day, Daniel’s cardiologist told us that after further review, the VSD was much larger then previously anticipated and would need to have open heart surgery. However, because of the RSV, his body was not strong enough for the surgery and had to wait 6 weeks. So, we were discharged and had a surgery date scheduled for early March.
At his first follow up appointment, Daniel was losing weight- very problematic for a newborn. The next few weeks were spent working with his entire care team to find ways to help him gain weight. He also underwent all testing again once his RSV cleared up, only to find another hole in his heart. This time an ASD (hole in the upper chambers of the heart) which was moderate in size and also needed repair.
Then, just as Daniel started gaining weight and things were looking better, he caught a slight cold. This quickly progressed and on February 21, he was hospitalized again with a dangerously high respiratory rate of 84 breaths a minute. After more tests, rhinovirus (common cold), early pneumonia, and further heart failure were noted. Daniel responded well to treatment and was released within 3 days. However, because his lungs were so compromised, his surgery date was moved back to April 18.
Daniel continues to fight to stay healthy enough for his surgery. He has weekly check ups and another round of testing before April 18. From what we know, surgery is expected to take about 5 hours. Daniel will then be in the Cardiac ICU for at least a few days. We were told to expect about a 1-2 week stay in the hospital. If all goes well, he should have a 6-week post op recovery.
The next day, Daniel’s cardiologist told us that after further review, the VSD was much larger then previously anticipated and would need to have open heart surgery. However, because of the RSV, his body was not strong enough for the surgery and had to wait 6 weeks. So, we were discharged and had a surgery date scheduled for early March.
At his first follow up appointment, Daniel was losing weight- very problematic for a newborn. The next few weeks were spent working with his entire care team to find ways to help him gain weight. He also underwent all testing again once his RSV cleared up, only to find another hole in his heart. This time an ASD (hole in the upper chambers of the heart) which was moderate in size and also needed repair.
Then, just as Daniel started gaining weight and things were looking better, he caught a slight cold. This quickly progressed and on February 21, he was hospitalized again with a dangerously high respiratory rate of 84 breaths a minute. After more tests, rhinovirus (common cold), early pneumonia, and further heart failure were noted. Daniel responded well to treatment and was released within 3 days. However, because his lungs were so compromised, his surgery date was moved back to April 18.
Daniel continues to fight to stay healthy enough for his surgery. He has weekly check ups and another round of testing before April 18. From what we know, surgery is expected to take about 5 hours. Daniel will then be in the Cardiac ICU for at least a few days. We were told to expect about a 1-2 week stay in the hospital. If all goes well, he should have a 6-week post op recovery.
Organizer and beneficiary
Jodie Brems
Beneficiary