the hardest thing to do . . .

One of the most difficult things to do is to leave the hospital without Tyler. He has to stay a bit longer to help his respiratory status improve.

Walking through the hallways late in the evening - all the hospital departments have closed for the day. All one can hear is the echo of footsteps. I should be hearing the sound of 'woo hoo' or 'hi mom' or 'get out'

Those are the sounds that I often times will hear from Tyler.

I really don't like to wish my life away but I do wish the next two weeks would just go by in the blink of an eye so our lives can return to normal.

reading story books and smiling for dad

It's early Saturday morning and the phone is ringing. As I look at the caller I.D. it says: Scottsdale Healthcare. That's the hospital that Tyler is in so my stomach sinks.

The nurse caring for him just wanted to call me to say that Tyler is doing great and she's thrilled with his progress. She had cared for him when he was admitted more than two weeks ago and again last week when he wasn't doing so well.

I entered Tyler's hospital room this morning and he was full of smiles. Craig had gone down earlier in the morning an was reading his one of his favorite story books: Curious George Goes to the Hospital. Tyler knows the story very well. He knows when George gets his shot and the pretty nurse takes very good care of him.

When the story was finished Tyler was exhausted. He's still very tired and has lost a bit of weight. He's already thin enough and really can't afford to lose much more. He quickly fell asleep but not before posing for the camera.

The twinkle in his eyes is returning and he is trying very hard to smile.

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.

one step forward - two steps back

Well -- it's been a pretty rough day for Tyler. He's been restless all day, can't sleep, can't rest and is back on the ventilator for support.

His blood pressure is running a bit too high and his patience is running a bit too low.

He's received a couple doses of I.V. Ativan to try to get him to rest but he won't allow the drug to let him sleep longer than five or ten minutes.

Poor little guy -- he's breaking my heart. He knows that I'm supposed to fix him but I can't this time.

I wish I had a magic pill to make him all better.

a rough night

We gotta take the bad with the good.

Yesterday Tyler was making small progress. The C.P.A.P. setting and the oxygen levels were turned down cause he was doing well.

During the night -- he started having a tough time so settings had to be increased.

I'm leaving for the hospital soon so I'll update more after I get to see him.

Tyler has turned a corner

As Craig and I came into Tyler's hospital room this morning -- we were greeted by one of Tyler's many physicians.

Either I'm getting older or these doctors are getting younger.

Anyway -- Tyler not only has severe lung disease but he has the lungs of an 80-year-old man.

We knew that.

Tyler's lungs have the capacity of an old man who has C.O.P.D. or severe emphysema.

Many of the physicians were talking late last night and early this morning and have come to the conclusion that Tyler has 'turned a corner.' They feel the worst of his illness is behind him and the road to recovery has begun.

Many of them honestly didn't believe that he would survive this episode of asthma. His oxygenation in his blood stream was a bit too low for awhile so, of course, we're concerned about more brain loss.

The settings on the airway assistance have been decreased again and they hope to have him off all breathing assistance within the week.

Early talk of being discharged from the hospital have begun and they are wanting to put Tyler is a rehab facility for about two weeks or so to give him some physical therapy. This will help him regain his strength and stamina. However, Tyler isn't a good candidate for rehab. He simply needs to come home. He doesn't tolerate anyone else taking care of him. He needs us.

We'll care for him at home just like we have in the past. He does much better with mom than he does with anyone else.

The photo shown above was taken a few years back while at the park feeding the ducks.

I'll post some new photos as soon as I can get some.