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.

he's growing a beard

OK - so he's not growing a beard. Craig and I have just been a bit lazy when it came to shaving Tyler when he was getting a bath.

Then Tyler was constantly pointing to his beard and telling us it was 'no good' so it came off last night.

I wanted to share with you all my little 'tall, dark and handsome' young man who perseveres through everything.

he's doing better

Not much to say other than Tyler seems to be getting a little bit better each day.

He's a little bit naughty and a little bit nice.

All he seems to want is to have his story books read to him and to play with the squiggle ball and his 'Wrinkles' while looking out his bedroom window.

home at last

Well -- Tyler came home this afternoon.

He's so happy to be here.

Woo hoo!

He's doing all his old tricks.

Fist shaking.

Woo hoo to all the baseball players.

Telling Allie the kitty to get out of his room.

And -- most importantly -- giving lots of kisses and hugs.

Here's hoping he stays here for awhile.

I'll post more soon when I have a moment to think.

he needs to come home . . .

Well Tyler is being Tyler. And anyone who knows Tyler also knows that means it's time to come home.

Tyler is pulling the heart monitor leads off his chest -- he won't leave the trach collar on -- he doesn't want to watch T.V. -- he doesn't want to have his milk in his tummy -- he doesn't want anything!

He's cranky and trying to climb out of bed.

Actually he's doing much better. One of his medications had to be adjusted and this has helped a lot.

Unfortunately he had a two-minute seizure on Tuesday morning which delayed his homecoming. He was scheduled to be sent home yesterday afternoon.

We'll wait and see if today will be the day to come home.

Fingers crossed!

another round of asthma . . .

Well -- Tyler was home with us for exactly one week and doing very well.

Then Friday morning he woke up following a very quiet, peaceful night.

And BOOM! The asthma hit him like a rock.

We got him back to the hospital and onto the ventilator for a short time and the asthma seemed to quiet down a bit.

Now he's back on the mist/O2 collar with C.P.A.P. at nighttime.

We just need to figure out what is causing the asthma attacks or bronchospasms he is experiencing.

All medications have remained the same and our household is just as it has been for the past 20-years.

Hopefully we'll get this figured out soon.

Tyler is not a happy camper right now. He's cranky, irritable and just plain grumpy.

Wish us luck.