On November 19, 2014, Caleb turned four months old. It has been the most rewarding yet challenging and difficult months of my life. This year, words cannot truly express how thankful we are for our very healthy and active kindergartener and our miracle boy. Caleb continues to amaze us with his fight and determination to overcome all of the obstacles that are thrown his way. In just his little time, he has undergone five surgeries, fought numerous infections, and beaten the odds when nobody thought possible.
Caleb received his tracheostomy on November 14th and his recovery has been all but easy. The surgery itself lasted a little over an hour and went smoothly. Unfortunately, it took a few hours after surgery to determine the amount of sedation and pain medication needed to make Caleb comfortable, but they eventually found his happy place. His arms were immediately restrained and would remain that way for over a week to ensure that the stoma and tracheostomy site were able to heal properly. Over the course of this past week, Caleb’s blood gases, which help determine his adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance, were falling outside the normal range. He was in need of more respiratory support, but the hope was that once the first tracheostomy change occurred, his gases would improve and stabilize.
Saturday proved to be one of the toughest days yet as Caleb’s status deteriorated. The first tracheostomy change was performed the prior day, but his blood gases remained consistently abnormal and this was a major concern. Not only were they having difficulties providing the proper ventilation support, but 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). At times, it got so bad that they would need to bag him by gently pushing oxygen into his lungs. As these episodes became more frequent throughout the day, they decided it would be best to paralyze him and give him time to recover. Overnight, we learned that along with a tracheostomy tube infection that was discovered earlier in the week, Caleb was also fighting another severe infection that had spread via his bloodstream (sepsis). This helped explain his unusual behavior, but not without a very emotional day and what feels like years off of my life.
On a better note, Caleb had received several doses of antibiotics by Sunday and it was indicative in his behavior as he was starting to act like my baby boy again. Since then, they have weaned his morphine, removed the paralytic, and thankfully, his blood gases have started to improve. In the days and weeks ahead, they will continue to wean his morphine and sedation medication slowly and will adjust his vent settings as needed until his blood gases stabilize. It is a huge relief to also mention that Caleb’s five week follow up appointment with the eye doctor showed that his eyes were doing great and that his surgery for Retinopathy of Prematurity had been successful.
Now that Caleb has a more secure airway, he is back in a crib and enjoying his new mobile with fun movements and soothing music. This along with his physical and occupational therapy will promote his sensory development for hearing and vision and will help with his growth and development. He is starting to smile and best of all, we are able to hold and snuggle him for endless hours.
Slow and steady wins the race…
Happy Thanksgiving to all and 1st Turkey Day to Caleb!!!
Caleb received his tracheostomy on November 14th and his recovery has been all but easy. The surgery itself lasted a little over an hour and went smoothly. Unfortunately, it took a few hours after surgery to determine the amount of sedation and pain medication needed to make Caleb comfortable, but they eventually found his happy place. His arms were immediately restrained and would remain that way for over a week to ensure that the stoma and tracheostomy site were able to heal properly. Over the course of this past week, Caleb’s blood gases, which help determine his adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance, were falling outside the normal range. He was in need of more respiratory support, but the hope was that once the first tracheostomy change occurred, his gases would improve and stabilize.
Saturday proved to be one of the toughest days yet as Caleb’s status deteriorated. The first tracheostomy change was performed the prior day, but his blood gases remained consistently abnormal and this was a major concern. Not only were they having difficulties providing the proper ventilation support, but 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). At times, it got so bad that they would need to bag him by gently pushing oxygen into his lungs. As these episodes became more frequent throughout the day, they decided it would be best to paralyze him and give him time to recover. Overnight, we learned that along with a tracheostomy tube infection that was discovered earlier in the week, Caleb was also fighting another severe infection that had spread via his bloodstream (sepsis). This helped explain his unusual behavior, but not without a very emotional day and what feels like years off of my life.
On a better note, Caleb had received several doses of antibiotics by Sunday and it was indicative in his behavior as he was starting to act like my baby boy again. Since then, they have weaned his morphine, removed the paralytic, and thankfully, his blood gases have started to improve. In the days and weeks ahead, they will continue to wean his morphine and sedation medication slowly and will adjust his vent settings as needed until his blood gases stabilize. It is a huge relief to also mention that Caleb’s five week follow up appointment with the eye doctor showed that his eyes were doing great and that his surgery for Retinopathy of Prematurity had been successful.
Now that Caleb has a more secure airway, he is back in a crib and enjoying his new mobile with fun movements and soothing music. This along with his physical and occupational therapy will promote his sensory development for hearing and vision and will help with his growth and development. He is starting to smile and best of all, we are able to hold and snuggle him for endless hours.
Slow and steady wins the race…
Happy Thanksgiving to all and 1st Turkey Day to Caleb!!!
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