Today marks day eighteen for Caleb and boy has it been a ride. One thing we have learned through this process is that every stable moment is a moment to be thankful for as his status can change in an instant. As soon as you think things are going well and heading in the right direction, the monitors start beeping and the alarms sound. This happens when Caleb has a slower-than-normal heart rate (bradycardia) or a low level of oxygen in his blood (desaturation) and can be caused by many things including just being positioned in a way he isn't comfortable.
When I last wrote on Thursday, July 31st, Caleb was doing extremely well on the conventional ventilator and the doctors were discussing moving forward with his CDH surgery this week. However, I arrived Friday to the news that he had taken a turn for the worst and that he had been switched to a high frequency jet ventilator (HFJV), which is a step between the oscillator vent and conventional vent. Since Caleb's CDH surgery can only be performed on the conventional ventilator, this now meant his surgery would be postponed.
He began to stabilize on the jet ventilator over the weekend and his kidneys were producing urine (not always consistently though). On the down side, he began to develop ascites, which is the accumulation of excess fluid in his abdominal cavity and his belly got very big and shiny. This was hard to see, but it actually looked worse than it really was and the doctor's did not seem concerned. Also, although he was stable, his status would change instantaneously when he was touched and just changing his diaper, taking his temperature or performing an x-ray or ultrasound would cause him to brady and desat. When this happens, the scene gets scary fast, especially when the respiratory therapist calls for help and begins bagging Caleb to help him breathe by gently pushing oxygen into his lungs from a resuscitation bag. His room fills up immediately with doctors and nurses and that is our cue to exit...haha...as this is something I would rather not watch.
After Caleb's weekend, the doctors thought it was a good time to try to the conventional ventilator again and this occurred Monday morning. However, by that night, he proved that he was not ready and was placed back on the jet, which he has remained on and has been stable. Unfortunately, Caleb's head ultrasound showed slightly more bleeding than was seen one week ago so they will continue to monitor closely.
So, as you can see, Caleb is a pretty complicated patient. During our discussions with the doctors, it is obvious that he is a very unique situation and they honestly don't know when the best time is for him to undergo his CDH surgery. They only see about 15-20 CDH patients a year, most of which are full term, so adding prematurity to the mix adds a new complexity and makes things much more difficult to understand and know exactly the best treatment. His chest x-ray today showed a significantly larger left lung than they have seen since his birth, which is very promising. The hope is that the bigger and stronger Caleb gets, the more lung reserve he can build up before his CDH surgery since the first 24-48 hours after surgery are the most critical and hardest to overcome.
We are thankful for these eighteen days (at dinner Saturday we cheered Caleb's two week birthday) and all we can ask is that he continues to fight as he surprises us (and the doctors) everyday.
When I last wrote on Thursday, July 31st, Caleb was doing extremely well on the conventional ventilator and the doctors were discussing moving forward with his CDH surgery this week. However, I arrived Friday to the news that he had taken a turn for the worst and that he had been switched to a high frequency jet ventilator (HFJV), which is a step between the oscillator vent and conventional vent. Since Caleb's CDH surgery can only be performed on the conventional ventilator, this now meant his surgery would be postponed.
He began to stabilize on the jet ventilator over the weekend and his kidneys were producing urine (not always consistently though). On the down side, he began to develop ascites, which is the accumulation of excess fluid in his abdominal cavity and his belly got very big and shiny. This was hard to see, but it actually looked worse than it really was and the doctor's did not seem concerned. Also, although he was stable, his status would change instantaneously when he was touched and just changing his diaper, taking his temperature or performing an x-ray or ultrasound would cause him to brady and desat. When this happens, the scene gets scary fast, especially when the respiratory therapist calls for help and begins bagging Caleb to help him breathe by gently pushing oxygen into his lungs from a resuscitation bag. His room fills up immediately with doctors and nurses and that is our cue to exit...haha...as this is something I would rather not watch.
After Caleb's weekend, the doctors thought it was a good time to try to the conventional ventilator again and this occurred Monday morning. However, by that night, he proved that he was not ready and was placed back on the jet, which he has remained on and has been stable. Unfortunately, Caleb's head ultrasound showed slightly more bleeding than was seen one week ago so they will continue to monitor closely.
So, as you can see, Caleb is a pretty complicated patient. During our discussions with the doctors, it is obvious that he is a very unique situation and they honestly don't know when the best time is for him to undergo his CDH surgery. They only see about 15-20 CDH patients a year, most of which are full term, so adding prematurity to the mix adds a new complexity and makes things much more difficult to understand and know exactly the best treatment. His chest x-ray today showed a significantly larger left lung than they have seen since his birth, which is very promising. The hope is that the bigger and stronger Caleb gets, the more lung reserve he can build up before his CDH surgery since the first 24-48 hours after surgery are the most critical and hardest to overcome.
We are thankful for these eighteen days (at dinner Saturday we cheered Caleb's two week birthday) and all we can ask is that he continues to fight as he surprises us (and the doctors) everyday.
