Once again, I am sorry for my delay in updating the blog. I am still trying to process everything that has happened over the last week...
Last Friday, September 5th, Caleb was extubated and his endotracheal tube (ETT) was removed at forty-eight days old. When hearing the news that morning of the doctor’s plan to extubate, I was beyond excited since this would be the first time since birth that Caleb would no longer require mechanical ventilation to maintain sufficient ventilation and oxygenation. I arrived at the hospital that afternoon and Caleb was breathing with the help of a CPAP, or continuous positive airway pressure. This type of respiratory support was delivering constant air pressure into Caleb’s nose, which was helping to keep the air sacs in his lungs open. In the days following Caleb's extubation, he was switched between a CPAP and nasal cannula, which is one of the least invasive forms of respiratory support.
The transition off the conventional ventilator was proving to be successful as frequent blood gases, which were used to help determine Caleb's adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance were perfect and within normal range. Some of the best and most priceless moments to date came that weekend!! For the first time, I was able to hold Caleb and stare at his adorable little face with no breathing tube. I watched him breathe on his own, listened to his muffled cry, and helped soothe him with a pacifier. It was then that I truly realized just how far Caleb had come.
Unfortunately, this incredible step forward for Caleb came with a few setbacks and a lot of confusion. "Complicated Caleb" had returned...
His blood gases, while extubated, continued to prove that he was doing great with regards to his respiratory function. However, he began having bradycardia episodes, where his heart rate would drop and become slower-than-normal and simultaneously cause a low level of oxygen in his blood (desaturation). With the majority of these episodes, Caleb would begin breathing well before the nurse would have time to respond. Other times, he would need to be stimulated, through rubbing or patting, until he recovered. The confusion amongst the team of doctors set in as the bradycardia episodes ranged from hours with none to periods where they would occur every few minutes. Sometimes totaling over one hundred episodes a day. Over the next several days, the doctors began trying to rule out every possible cause. An echocardiogram and electrocardiogram (EKG) were performed to check Caleb's heart function and the electrical activity of his heart. An electroencephalogram (EEG) was performed to measure and record the electrical activity of his brain and to confirm that he was not having seizures. A repeat head ultrasound showed reduced ventricle size and validated that the shunt was working properly. Finally, his feeds that had been increased to 12cc per hour continuously were stopped to see if reflux, which is prevalent in CDH babies, was playing a part in the episodes. A pediatric cardiologist was consulted due to some concern over his EKG and a possible heart block, but after analyzing the rhythm of his heartbeat further they dismissed this as they believed there was another underlying issue. As much as we longed for an explanation, we were relieved when all of the results came back normal. The days went on and the bradycardia episodes continued...
What came next still gives me chills thinking about it. I made my routine phone call Thursday morning around 6:30 AM to see how Caleb did overnight. Rather than the nurse I expected, a doctor picked up and began explaining that Caleb's status had taken a turn for the worst. His heart rate had dropped once again, but this time, he did not respond to stimulation and he coded. They tried to resuscitate him by "bagging", but with no success they started administering chest compressions. Thankfully, after some persistence, they were able to re-intubate and he was breathing again with the help of a ventilator.
Caleb hasn't been himself since that morning and it was determined that his immune system had shut down due to sepsis (blood infection). Sepsis is a condition in which the body is fighting a severe infection that has spread via the bloodstream. While waiting for the final blood culture results, which take forty-eight hours, he had been receiving several different antibiotics since Thursday. Now that the specific bacteria has been identified, Caleb is now receiving the antibiotic that will hopefully kill the organism responsible for his infection SOON. Oddly enough, since Caleb has been re-intubated, his bradycardia episodes are happening much less frequently. And, as much as I would like to say the infection was also causing the severe bradycardia episodes earlier in the week, I am honestly not convinced that is the case. I hope I am wrong, but I can't help but think that something is being missed.
I am puzzled with all of the events that took place this week and full of emotions as the roller coaster ride continues. I feel helpless and I just want my very alert and happy baby boy back that I held a week ago...
Keep fighting, Caleb!!!
Last Friday, September 5th, Caleb was extubated and his endotracheal tube (ETT) was removed at forty-eight days old. When hearing the news that morning of the doctor’s plan to extubate, I was beyond excited since this would be the first time since birth that Caleb would no longer require mechanical ventilation to maintain sufficient ventilation and oxygenation. I arrived at the hospital that afternoon and Caleb was breathing with the help of a CPAP, or continuous positive airway pressure. This type of respiratory support was delivering constant air pressure into Caleb’s nose, which was helping to keep the air sacs in his lungs open. In the days following Caleb's extubation, he was switched between a CPAP and nasal cannula, which is one of the least invasive forms of respiratory support.
The transition off the conventional ventilator was proving to be successful as frequent blood gases, which were used to help determine Caleb's adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance were perfect and within normal range. Some of the best and most priceless moments to date came that weekend!! For the first time, I was able to hold Caleb and stare at his adorable little face with no breathing tube. I watched him breathe on his own, listened to his muffled cry, and helped soothe him with a pacifier. It was then that I truly realized just how far Caleb had come.
Unfortunately, this incredible step forward for Caleb came with a few setbacks and a lot of confusion. "Complicated Caleb" had returned...
His blood gases, while extubated, continued to prove that he was doing great with regards to his respiratory function. However, he began having bradycardia episodes, where his heart rate would drop and become slower-than-normal and simultaneously cause a low level of oxygen in his blood (desaturation). With the majority of these episodes, Caleb would begin breathing well before the nurse would have time to respond. Other times, he would need to be stimulated, through rubbing or patting, until he recovered. The confusion amongst the team of doctors set in as the bradycardia episodes ranged from hours with none to periods where they would occur every few minutes. Sometimes totaling over one hundred episodes a day. Over the next several days, the doctors began trying to rule out every possible cause. An echocardiogram and electrocardiogram (EKG) were performed to check Caleb's heart function and the electrical activity of his heart. An electroencephalogram (EEG) was performed to measure and record the electrical activity of his brain and to confirm that he was not having seizures. A repeat head ultrasound showed reduced ventricle size and validated that the shunt was working properly. Finally, his feeds that had been increased to 12cc per hour continuously were stopped to see if reflux, which is prevalent in CDH babies, was playing a part in the episodes. A pediatric cardiologist was consulted due to some concern over his EKG and a possible heart block, but after analyzing the rhythm of his heartbeat further they dismissed this as they believed there was another underlying issue. As much as we longed for an explanation, we were relieved when all of the results came back normal. The days went on and the bradycardia episodes continued...
What came next still gives me chills thinking about it. I made my routine phone call Thursday morning around 6:30 AM to see how Caleb did overnight. Rather than the nurse I expected, a doctor picked up and began explaining that Caleb's status had taken a turn for the worst. His heart rate had dropped once again, but this time, he did not respond to stimulation and he coded. They tried to resuscitate him by "bagging", but with no success they started administering chest compressions. Thankfully, after some persistence, they were able to re-intubate and he was breathing again with the help of a ventilator.
Caleb hasn't been himself since that morning and it was determined that his immune system had shut down due to sepsis (blood infection). Sepsis is a condition in which the body is fighting a severe infection that has spread via the bloodstream. While waiting for the final blood culture results, which take forty-eight hours, he had been receiving several different antibiotics since Thursday. Now that the specific bacteria has been identified, Caleb is now receiving the antibiotic that will hopefully kill the organism responsible for his infection SOON. Oddly enough, since Caleb has been re-intubated, his bradycardia episodes are happening much less frequently. And, as much as I would like to say the infection was also causing the severe bradycardia episodes earlier in the week, I am honestly not convinced that is the case. I hope I am wrong, but I can't help but think that something is being missed.
I am puzzled with all of the events that took place this week and full of emotions as the roller coaster ride continues. I feel helpless and I just want my very alert and happy baby boy back that I held a week ago...
Keep fighting, Caleb!!!
 CPAP |  Nasal Cannula |  Back to breathing tube...not feeling too well! |
Blue Angels from the Hopkins NICU.
