sleeping like a baby

Although he's exhausted and sleeping through the day and night -- Tyler has made a tremendous amount of improvement in the past 24-hours.

The physicians plan was to keep Tyler on the oxygen and mist collar throughout the day and use the ventilator at night to help him rest -- Tyler will not cooperate with that.

Simply put -- he hates the ventilator.

So he's on the oxygen and mist collar all day and all night with respiratory and blood gas results coming back good.

Now the easy part begins. We have to get our home ready for Tyler and the entourage of medical staff that comes with him. He'll need nursing care for the times that Craig or I are not able to help him. He'll need physical therapists to help him get his strength back and learn to use his body again and the physicians who will be watching him very closely.

The picture listed above was taken this afternoon. He's tired. He's exhausted. He's ready to come home.

a huge sigh of relief

Tyler made a huge step forward today.

The C.P.A.P. breathing help he was getting was turned off and he was placed onto humidified air with a little bit of additional oxygen added. This is placed over his trach using a trach collar.

He is breathing all on his own with very minimal assistance from the extra oxygen.

He still doesn't like the I.V. in his arms or the electrodes all over his chest but he wouldn't be him if he liked anything about the hospital.

We still have a little way to go before he comes home but I'll take any move forward that I can.

The photo shown above was taken while visiting our daughter - Christi - in Tucson. He's showing support for sis.

another small step forward

Well Tyler had a pretty good night last night. He rested as quietly as he could and did very well on the C.P.A.P. all day yesterday.

Today he'll get challenged more with his respiratory status to get him off the ventilator.

he's coming around and getting angry

Anyone who truly knows Tyler knows the little temper he has when he gets really angry.

Well that temper is starting to flair up because he's getting really tired of being in the hospital. Unfortunately for me -- he thinks that I'm the reason he's here. He's only hit me twice. Since I don't wear glasses anymore it doesn't hurt quite so bad.

Fortunately for him -- that means he's feeling better and getting better. Some of the physicians and respiratory therapists were talking about turning his C.P.A.P. settings even lower so he can move toward a trach collar with humidified air and a little bit of oxygen blended in with it. As soon as he tolerates the trach collar he can come home.

We'll have to go back to home-care nursing, physical therapists and doctors visits every day or two for awhile. I really can't complain about that though. I'd rather have the entire neighborhood in my house every day than to have Tyler in the hospital.

The photo shown above was taken after Tyler won the bowling tournament during his High School days. The trophy is displayed in his bedroom right next to his picture of Grandpa.

Hmmm -- something new

Although Tyler has made small steps toward recovery he still has a long road ahead of him. There always seems to be a fork in the road when progress has been made.

He's developed a rash on his chest, arms, back, shoulders, neck, face and arms. So far nobody has been able to figure out what is causing the rash. Not only is he on three separate antibiotics -- but he's on at least six other I.V. medications in addition to his oral meds.

The rash you see above doesn't appear to be causing him any discomfort but it just looks painful. I couldn't imagine having my entire upper body break out in a bright red rash that bleeds if you touch it.

Tyler has stamina. Sweet little guy. The settings on his ventilator were slightly decreased today but he's very, very agitated. It seems he is suffering from panic attacks. He breaks out in a cold sweat, his heart rate goes up and he gets very angry.

Some of the nurses say it's from all the sedatives he's been on and now he has to begin the weaning process off all the narcotics. So not only does the little guy have to recovery from pneumonia -- now he need rehab for narcotic addiction.

It doesn't seem fair.

Up and Down

This hospitalization for Tyler is his first for many, many years. He has been relatively healthy for the past three or four years. With the exception of an upper respiratory infection or the occasional bout of bronchitis -- he's been in pretty good health.

However, this illness is not new to Tyler. Most of his previous hospitalizations have been just as rough on him. He has seen too many physicians, nurses and respiratory therapists in his short life.

His life began needing a ventilator for his breathing support and he's needed a bit of help now and again. I'm hopeful that this brief bout of illness will just be another long-lost memory for him when he finally comes home.

To watch Tyler go through this horrible illness is difficult at best. Sometimes while I'm sitting at his bedside -- I often times wonder where he gets his strength, determination and stamina. He has no concept of time or space so he must draw his strength from somewhere within himself.

Tyler is a very good example of all people at their finest. Just when you think you can't go another step or are ready to give up -- just think about Tyler. If he never gives up then neither should we.

Just look at the picture of Tyler shown here. Although this picture was taken a few years ago -- nearly every picture we have of him is the same. His eyes are sparkling, he has a wide smile on his face and his positive attitude is contagious.

two steps forward - one step back

I stand corrected.

When Tyler's physician came in this afternoon he was very pleased with Tyler's progress.

Really?

That's all I could ask.

Yes, Really! "Tyler has made tremendous strides forward. A little set-back shouldn't be seen as failure on Tyler's part."

Tyler is a tough little guy. He's sedated tonight and back on the ventilator until morning when he'll get challenged again.

This photo was taken yesterday morning when I asked him "Do you love mom?"

His little attempt at a smile tells me that he loves me.