the days go by so slowly

Not much new to say. Tyler has been pretty wired from all the high doses of steroids he has to take to keep his asthma under control.

One of the side effects is the steroids may cause anxiety attacks for those taking such high doses.

Unfortunately Tyler has been experiencing these anxiety attacks for the past few weeks. He simply doesn't understand what is happening to him. His heart rate rises up to the 140's, his respirations rise to the high 20's and low 30's and his breathing becomes very labored.

The only way to calm him is to give him an anti-anxiety medication which causes him to become very sleepy. So far, one-half a tablet will keep him relaxed. I really hate to give so much medication to such a fragile little guy but I simply cannot watch him have a panic attack.

Otherwise he is doing pretty well.

The pulmonary doctor has stated that Tyler has entered the end-stage of his lung disease. I'm not sure exactly what this means for all of us. Tyler has always been so strong and resilient and has battled every part of this disease with vigor. I just hope he gains enough strength back to keep fighting.

I guess time will tell.

a little set-back

Well -- as Tyler was being weaned from the steroids (which keep the asthma under control) he wound up back in the I.C.U.

Just two days after being completely off the medications he crashed pretty hard. His respirations were very labored, fast and causing him a lot of discomfort.

Obviously we got him back to the Emergency Department where he was quickly placed back on a ventilator and given high doses of steroids.

Less than three hours later he was acting as if nothing had happened.

Apparently his dependency on steroids is much more severe that originally thought.

So, he'll stay on steroids for another six to eight weeks while his posse of doctors try to figure out the next course of treatment.

I'm told I can bring him home Wednesday morning. So I'll be down at the hospital at 7:30 following shift change to gather my son and drive him home.