Today, we prepare ourselves for Caleb's 5th surgery. Caleb will be one hundred and eighteen days old tomorrow and will undergo a surgical procedure for a tracheostomy. An incision will be made in his neck into the trachea (windpipe) and the resulting stoma (hole), or tracheostomy, will be used as the site for his tracheostomy tube to be inserted. The tube will allow him to breathe without the use of his nose or mouth.
Last week was one of Caleb's best since his eye surgery and CDH repair. He was back to full feeds and his blood gases, which help determine his adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance were finally within normal range. We were also able to hold him again after three weeks and it was a great feeling. On the flip side, this week was a bit harder for Caleb. After being on pain medication (i.e. Methadone, Morphine, Ativan) for his entire life, the NICU team has been slowly weaning Caleb off all pain medicine. On Saturday, November 8th, Caleb received his last dose of methadone and within a few days was showing signs of withdrawal. That along with his agitation from the feeding tube in his mouth made him extremely irritable. He was restless, had trouble sleeping, sucked on his pacifier excessively, would get very clammy at times, and he made crazy movements with his hands and feet that were sometimes uncontrollable. This was very difficult to watch as we were told that withdrawal could last weeks. They decided to start giving morphine around the clock since the decision was made on Tuesday to proceed with his tracheostomy surgery and he would eventually need to be weaned off pain medication again in the near future. In the meantime, this helped Caleb settle out and he's been much more comfortable the past few days.
Two times this week, Caleb wanted to keep things interesting in the NICU and self extubated himself, meaning he somehow removed his endotracheal tube. Although this can sometimes lead to serious complications, Caleb did well both times and was thankfully reintubated with no issues. Caleb was extubated prior to his CDH recurrence and there were discussions about letting him try again. However, since he has a partial rehernia at the moment, the concern is whether or not the pressure from the nasal canal or continued positive airway pressure (CPAP) would worsen the hernia and lead to another surgery. This was not a risk that the NICU team and general pediatric surgeons were willing to take. So the decision for a tracheostomy seemed clear...
We have since gotten over the initial shock of this procedure and have been preparing ourselves for this possibility. The hope is that it is temporary and that it will give him the time he needs to grow and allow his lungs to get bigger and stronger. As much as we are prepared, we are also scared. After receiving his tracheostomy, he will be sedated (almost paralyzed) and will once again receive various medications to control his pain. In addition, his arms and legs will be restrained for 1-2 weeks allowing the stoma and tracheostomy site to heal properly. The surgeon will then perform the first tracheostomy tube change at which time Caleb can begin to be a baby again! The tracheostomy will be much more comfortable for him and will provide a more stable and secure airway in which he will no longer require as much pain medication and sedation. We are looking forward to seeing his adorable face and hopefully a smile soon. Also, we will be able to hold and interact with him regularly and he can begin to develop with the help of occupational and physical therapists. Unfortunately, this also means that Caleb will require extra care and supervision when he is finally able to come home. The unknown is hard, but like everything else, this too will work itself out...
Good luck to our little warrior tomorrow. Keep fighting, Caleb!
Last week was one of Caleb's best since his eye surgery and CDH repair. He was back to full feeds and his blood gases, which help determine his adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance were finally within normal range. We were also able to hold him again after three weeks and it was a great feeling. On the flip side, this week was a bit harder for Caleb. After being on pain medication (i.e. Methadone, Morphine, Ativan) for his entire life, the NICU team has been slowly weaning Caleb off all pain medicine. On Saturday, November 8th, Caleb received his last dose of methadone and within a few days was showing signs of withdrawal. That along with his agitation from the feeding tube in his mouth made him extremely irritable. He was restless, had trouble sleeping, sucked on his pacifier excessively, would get very clammy at times, and he made crazy movements with his hands and feet that were sometimes uncontrollable. This was very difficult to watch as we were told that withdrawal could last weeks. They decided to start giving morphine around the clock since the decision was made on Tuesday to proceed with his tracheostomy surgery and he would eventually need to be weaned off pain medication again in the near future. In the meantime, this helped Caleb settle out and he's been much more comfortable the past few days.
Two times this week, Caleb wanted to keep things interesting in the NICU and self extubated himself, meaning he somehow removed his endotracheal tube. Although this can sometimes lead to serious complications, Caleb did well both times and was thankfully reintubated with no issues. Caleb was extubated prior to his CDH recurrence and there were discussions about letting him try again. However, since he has a partial rehernia at the moment, the concern is whether or not the pressure from the nasal canal or continued positive airway pressure (CPAP) would worsen the hernia and lead to another surgery. This was not a risk that the NICU team and general pediatric surgeons were willing to take. So the decision for a tracheostomy seemed clear...
We have since gotten over the initial shock of this procedure and have been preparing ourselves for this possibility. The hope is that it is temporary and that it will give him the time he needs to grow and allow his lungs to get bigger and stronger. As much as we are prepared, we are also scared. After receiving his tracheostomy, he will be sedated (almost paralyzed) and will once again receive various medications to control his pain. In addition, his arms and legs will be restrained for 1-2 weeks allowing the stoma and tracheostomy site to heal properly. The surgeon will then perform the first tracheostomy tube change at which time Caleb can begin to be a baby again! The tracheostomy will be much more comfortable for him and will provide a more stable and secure airway in which he will no longer require as much pain medication and sedation. We are looking forward to seeing his adorable face and hopefully a smile soon. Also, we will be able to hold and interact with him regularly and he can begin to develop with the help of occupational and physical therapists. Unfortunately, this also means that Caleb will require extra care and supervision when he is finally able to come home. The unknown is hard, but like everything else, this too will work itself out...
Good luck to our little warrior tomorrow. Keep fighting, Caleb!
