Steady As We Go

Over the last week, I have continued to get better. Although not as fast as everyone hoped, I have continued to make small weaning adjustments on the ventilator. I am still experiencing the episodes of pain that lead to difficulty breathing. I have about 2 or 3 of them a day and they last about 15-30 minutes. They always seem to happen when I am passing gas and/or having a bowel movement. Because my doctors have not been able to find anything from the tests that I have taken over the last week, they are thinking that it may be be colic. The symptoms of colic are normally harder for the parents to deal with than the child, but it is a very difficult for a kid with breathing problems. The good news is that colic goes away. Colic is a sort of mysterious condition that doesn't have a test. It is diagnosed by eliminating all other possible conditions. I am going to have an EEG (electroencephalogram) test to rule out the possibility of seizures. My doctors don't think that I am having seizures, but they just want to be sure and be able to cross it off the list of things that I don't have. The episodes are most concerning to my Mom because she thinks they are really what led to me being back on the ventilator. Before the surgery, I was able to recover from the fits, but after the surgery I didn't have enough strength to recover. She's worried that if I come off of the ventilator that I might have a hard time recovering if the episodes continue, but is prayerful that I now have my strength back to withstand them. My doctors are going to get together to try to figure out how and when they will be able to get me off the ventilator. I'll be sure to let you all know as soon as we figure anything out. As always, thanks again for all of your kind words and actions, thoughts and prayers. They really have helped get us through these difficult times.