After what seemed like an incredibly long day at work, I arrived at the hospital to find Caleb breathing with the help of a CPAP, or continuous positive airway pressure. Even better, the nurse told me that Caleb had only had a few bradycardia episodes since his transition from the conventional ventilator to CPAP, which had been several hours at that point. I couldn’t help but smile and feel a sense of relief. The rest of Wednesday and Thursday were focused on maintaining his respiratory support and slowly increasing his feeds to where he had been before the blood infection.
Caleb turned two months old on Friday, September 19th, and to our surprise, the nursing staff moved him to a room with a window. This was greatly appreciated as we would now be able to introduce Caleb to the sunlight!!! Unfortunately, along with his new room came yet another setback. Caleb began spitting up and appeared very uncomfortable. The doctor’s started to eliminate causes such as his feeds and the potential that he was showing signs of withdrawal due to how he was receiving his doses of Methodone (pain reliever), which had been switched from IV to orally through his feeding tube. In addition, they performed an abdominal x-ray and ultrasound that did not provide any answers as to why he was suddenly getting sick. This went on for over twenty-four hours and after removing some of the fluid from his stomach, by way of his feeding tube, there was a sudden change in his behavior and he was no longer “unhappy”. They believe his upset stomach was the result of gastritis, which is the inflammation of the lining of the stomach, and was most likely caused by the infection and other medication and steroids he has been receiving multiple times a day.
His demeanor all around had gotten so much better since Saturday and he only fussed when provoked…haha! At times, he even enjoyed hanging out in his bouncer and best of all, I was enjoying my snuggle time with him. It’s a different kind of hard being at work these days, as before we worried about his changing status and now I want to be there to hold him and interact with him, which has just recently become the new normal. He is back to full feeds (16 cc/hour or approximately 13 ounces/day) and seems to be tolerating them well. Also, his respiratory status has been perfect and they were even able to switch him from the very uncomfortable CPAP to the nasal cannula.
My goal was to finish this blog by telling you that Caleb has been great since Saturday, but he must have had a different plan. Thursday, I received yet another phone call from a doctor at Hopkins stating that Caleb’s status had changed. Some of the nursing staff had noticed some irregular activity and movements from Caleb, which appeared similar to that of a seizure. A neurologist was consulted and a head ultrasound was performed, which had remained stable when compared to the one last week. In addition, he was monitored via an electroencephalogram (EEG) for twenty-four hours to measure and record the electrical activity of his brain and to confirm whether or not he was having seizures. Late last night, we got the good news that the neurologists do not believe there was any seizure activity and some of the confusion came due to the movements of his body and bobbing of his head when he breathes! Thankfully, he does not need any standing medication to treat seizures at this point and the NICU staff will continue to look for and report any additional unusual behavior. Hopefully, that was the last seizure scare…
Our poor boy just needs a break. Keep fighting, Caleb!!!