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.

Saturday, May 9, 2009

My plan is to post some of the photos we have of Tyler that are my favorites. This photo was taken November 2003 as he was taking a quick nap on the couch in the front room.

Today doesn't bring much more news. The ventilator that Tyler has been on for the past 10-days was turned to a CPAP mode yesterday which requires him to do all the breathing on his own with just a bit of oxygen help.

After more than 24-hours of this -- he got a bit tired. The plan is to put him back on the ventilator tonight, give him a sedative to help him sleep and rest himself for another tough day tomorrow.

This evening when Craig and I walked into the room Tyler just looked at his dad and started to cry. His crying was his way of telling him that he wanted Craig to fix everything and make it better. Following a neck and shoulder massage Tyler relaxed a bit and started to fall back asleep.

I'll post more tomorrow after he rests for the night.