When we first learned of Caleb's diagnosis at our eighteen week sonogram, we tried to prepare ourselves for a long and difficult journey. Looking back, I am not sure it is possible to fully prepare yourself for a sick baby. With a fifty percent chance of survival, we are thankful for an incredible five months. It has been a roller coaster ride full of ups and downs, good days and bad days, and a lot of trying times. In addition to celebrating Caleb being five months old, we are forced to watch him suffer and fight through yet another obstacle. For the first time in over a month, we were able to truly enjoy our little boy last week. We held him for countless hours, captured him being held by his big brother, Brody, for the first time, helped and participated in his occupational therapy, and just cherished him being awake, alert, and smiling. Although the amazing moments didn't last nearly long enough, we are grateful as its remembering those times that are giving us the strength to get through this very challenging week.
We arrived Sunday to see a rash that had been brewing overnight. There was no immediate concern as he was acting normal and was not showing any signs of discomfort. It wasn't until that night that Caleb's status began to deteriorate. During my routine call to the overnight nurse, I learned that he was once again requiring 100% oxygen. This was similar to Thanksgiving when he contracted a rhinovirus, however, this time Caleb was not responding to the increase in oxygen. A blood and tracheostomy culture were sent and his labs were elevated indicating that he was fighting some type of virus/infection. In order to treat his sudden respiratory distress, they began giving him inhaled nitric oxide to help relax his pulmonary blood vessels and improve oxygenation. They utilized a proBNP test to detect, diagnose, and evaluate the severity of the stress and damage to Caleb's heart and the results were much higher than normal. An echocardiogram that morning confirmed that his pulmonary hypertension had worsened and his heart was working too hard. Pulmonary hypertension is high blood pressure that occurs in the main artery that carries blood from the right side of the heart (the ventricle) to the lungs. When the smaller blood vessels in the lungs become more resistant to blood flow, the right ventricle must work harder to pump enough blood through the lungs. It was then that the decision was made to move Caleb from the NICU to the Pediatric Intensive Care Unit (PICU) where they were capable of administering certain medications and placing him on the extracorporeal membrane oxygenation (ECMO) machine, if necessary. ECMO is a temporary bypass technique used to provide both cardiac and respiratory support to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function. We could have never imagined that after such a great week, we were now faced with the possibility of ECMO.
Leaving the NICU was devastating news to me. Not only has it been my second home for the last five months, but I have met and created friendships with some amazing doctors, nurses, and respiratory therapists. They welcomed my family into the NICU, made us comfortable day in and day out, made us laugh at even the darkest of times, and most importantly, treated and cared for Caleb as if he was their own. Their compassion and kindness toward our family and their support has gotten us through these difficult and trying times, and for that, we will be forever thankful. It is unclear at the moment if Caleb will ever return to the NICU, but we trust their decision and know that he is ultimately in the best place possible.
Caleb arrived in the PICU on Monday, December 15th, and the team has focused on maximizing his respiratory support and oxygenation. Since the inhaled nitric oxide was not working well enough, they started Epoprostenol (Flolan) to relax his blood vessels and increase the supply of blood to his lungs, in hopes that it would reduce the workload of his heart. Although Caleb has been paralyzed and heavily sedated, he has been stable for the most part and continues to rest and recover. He is no longer requiring as much oxygen and his repeat proBNP and echocardiograms are very much improved. They believe that the rash was caused by an allergic reaction to the antibiotic, Oxacillin, which he had been receiving for three weeks to fight his most recent bacteria blood and tracheostomy infection. The onset of the reaction to Oxacillin began when it was stopped Saturday afternoon. To date, all of Caleb's labs with regards to his blood and virus swabs have been negative. Therefore, we may never truly know if Caleb's sudden respiratory failure was due to the allergic reaction, in addition to some other underlying virus/pneumonia. Once they believe Caleb has fully recovered and his lungs are in a better place, they will begin weaning him slowly from all of the new medications and treatments that he started receiving this week.
Happy five months to our baby boy! Hoping he continues to fight and that there are better days ahead...
We arrived Sunday to see a rash that had been brewing overnight. There was no immediate concern as he was acting normal and was not showing any signs of discomfort. It wasn't until that night that Caleb's status began to deteriorate. During my routine call to the overnight nurse, I learned that he was once again requiring 100% oxygen. This was similar to Thanksgiving when he contracted a rhinovirus, however, this time Caleb was not responding to the increase in oxygen. A blood and tracheostomy culture were sent and his labs were elevated indicating that he was fighting some type of virus/infection. In order to treat his sudden respiratory distress, they began giving him inhaled nitric oxide to help relax his pulmonary blood vessels and improve oxygenation. They utilized a proBNP test to detect, diagnose, and evaluate the severity of the stress and damage to Caleb's heart and the results were much higher than normal. An echocardiogram that morning confirmed that his pulmonary hypertension had worsened and his heart was working too hard. Pulmonary hypertension is high blood pressure that occurs in the main artery that carries blood from the right side of the heart (the ventricle) to the lungs. When the smaller blood vessels in the lungs become more resistant to blood flow, the right ventricle must work harder to pump enough blood through the lungs. It was then that the decision was made to move Caleb from the NICU to the Pediatric Intensive Care Unit (PICU) where they were capable of administering certain medications and placing him on the extracorporeal membrane oxygenation (ECMO) machine, if necessary. ECMO is a temporary bypass technique used to provide both cardiac and respiratory support to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function. We could have never imagined that after such a great week, we were now faced with the possibility of ECMO.
Leaving the NICU was devastating news to me. Not only has it been my second home for the last five months, but I have met and created friendships with some amazing doctors, nurses, and respiratory therapists. They welcomed my family into the NICU, made us comfortable day in and day out, made us laugh at even the darkest of times, and most importantly, treated and cared for Caleb as if he was their own. Their compassion and kindness toward our family and their support has gotten us through these difficult and trying times, and for that, we will be forever thankful. It is unclear at the moment if Caleb will ever return to the NICU, but we trust their decision and know that he is ultimately in the best place possible.
Caleb arrived in the PICU on Monday, December 15th, and the team has focused on maximizing his respiratory support and oxygenation. Since the inhaled nitric oxide was not working well enough, they started Epoprostenol (Flolan) to relax his blood vessels and increase the supply of blood to his lungs, in hopes that it would reduce the workload of his heart. Although Caleb has been paralyzed and heavily sedated, he has been stable for the most part and continues to rest and recover. He is no longer requiring as much oxygen and his repeat proBNP and echocardiograms are very much improved. They believe that the rash was caused by an allergic reaction to the antibiotic, Oxacillin, which he had been receiving for three weeks to fight his most recent bacteria blood and tracheostomy infection. The onset of the reaction to Oxacillin began when it was stopped Saturday afternoon. To date, all of Caleb's labs with regards to his blood and virus swabs have been negative. Therefore, we may never truly know if Caleb's sudden respiratory failure was due to the allergic reaction, in addition to some other underlying virus/pneumonia. Once they believe Caleb has fully recovered and his lungs are in a better place, they will begin weaning him slowly from all of the new medications and treatments that he started receiving this week.
Happy five months to our baby boy! Hoping he continues to fight and that there are better days ahead...
