This week marks three weeks (sorry for the blog delay) since Caleb was in respiratory distress and was moved to the Pediatric Intensive Care Unit (PICU) at Johns Hopkins Hospital. It has been tough watching Caleb fight through yet another tracheostomy infection and pneumonia. This time the circumstances were much different as his oxygen requirement increased suddenly and his pulmonary hypertension was at its worst.
Caleb arrived in the PICU on Monday, December 15th, and the team immediately began focusing on maximizing his respiratory support and oxygenation. For most of his stay in the PICU, Caleb was paralyzed, heavily sedated and was receiving inhaled nitric oxide and Epoprostenol (Flolan) to help relax his blood vessels and increase the supply of blood to his lungs, in hopes that it would reduce the workload of his heart. Thankfully, Caleb responded well to the medication and treatment and did not need the extracorporeal membrane oxygenation (ECMO) machine. Caleb was moved back to the NICU last week and it has been nice being around familiar faces and a relief that he is being cared for by doctors, nurses, and respiratory therapists that know him very well.
The follow-up echocardiogram was improved and remains stable and they will continue to monitor his heart function and pulmonary hypertension. Caleb also had an eye exam to see how his eyes responded to the laser surgery (also called photocoagulation) to correct his retinopathy of prematurity (ROP). As of now, we are happy to report that the surgery was successful and he is not due for another eye exam for three months.
Caleb’s recovery has been slow, but he has been stable and resting comfortably for the most part. He is no longer being paralyzed and has had some good moments of being awake and alert. Unfortunately, his list of sedation and pain medication seems to grow with each infection, which leads to a lot of weaning and withdrawal. At times, he is extremely irritable, restless and difficult to console. These symptoms, along with a temperature on and off, make it hard to determine if he is withdrawing or getting sick again. Although I hope he is only withdrawing, it is not easy to watch as we have been in this position so many times before. It’s a constant uphill battle and frustrating because as soon as we feel like we are making progress and getting close to being off the narcotics, his status changes and it’s as if we start all over again. So, in the meantime, we will take it minute by minute with Caleb…cherish the good days and hope the bad days are few and far between. We can only hope that the weaning process gets easier for Caleb and that he can get healthy and stay healthy. His lungs just need time to recover and get stronger…
Wishing you all a Happy & Healthy New Year.
Keep fighting, Caleb.
Caleb arrived in the PICU on Monday, December 15th, and the team immediately began focusing on maximizing his respiratory support and oxygenation. For most of his stay in the PICU, Caleb was paralyzed, heavily sedated and was receiving inhaled nitric oxide and Epoprostenol (Flolan) to help relax his blood vessels and increase the supply of blood to his lungs, in hopes that it would reduce the workload of his heart. Thankfully, Caleb responded well to the medication and treatment and did not need the extracorporeal membrane oxygenation (ECMO) machine. Caleb was moved back to the NICU last week and it has been nice being around familiar faces and a relief that he is being cared for by doctors, nurses, and respiratory therapists that know him very well.
The follow-up echocardiogram was improved and remains stable and they will continue to monitor his heart function and pulmonary hypertension. Caleb also had an eye exam to see how his eyes responded to the laser surgery (also called photocoagulation) to correct his retinopathy of prematurity (ROP). As of now, we are happy to report that the surgery was successful and he is not due for another eye exam for three months.
Caleb’s recovery has been slow, but he has been stable and resting comfortably for the most part. He is no longer being paralyzed and has had some good moments of being awake and alert. Unfortunately, his list of sedation and pain medication seems to grow with each infection, which leads to a lot of weaning and withdrawal. At times, he is extremely irritable, restless and difficult to console. These symptoms, along with a temperature on and off, make it hard to determine if he is withdrawing or getting sick again. Although I hope he is only withdrawing, it is not easy to watch as we have been in this position so many times before. It’s a constant uphill battle and frustrating because as soon as we feel like we are making progress and getting close to being off the narcotics, his status changes and it’s as if we start all over again. So, in the meantime, we will take it minute by minute with Caleb…cherish the good days and hope the bad days are few and far between. We can only hope that the weaning process gets easier for Caleb and that he can get healthy and stay healthy. His lungs just need time to recover and get stronger…
Wishing you all a Happy & Healthy New Year.
Keep fighting, Caleb.
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