the road to recovery has twists and turns along the way

Throughout the past 24-years of Tyler's life -- his road to recovery has been fought with many twists and turns along the way.

Given his fragile condition when he was born - his recovery began at birth. Tyler's life has only improved along the way. He has gotten better and experienced more fun with each birthday that passes.

His current hospitalization and physical set backs will only become a new challenge in Tyler's life. He doesn't see illness, pain, or trauma as a road block. He sees these things as a new challenge for himself and for those who care enough to make the journey with him. He sees these things as a new way to reconnect with family, friends and loved ones.

Although every person who knows Tyler experiences love, Tyler gives more love in return. The one person in his life who means the most to him is his Grandpa Carol. Grandpa has been by his side through thick and thin. Grandpa was a regular visitor at the Intensive Care Nursery. Grandpa continues his love for Tyler by guiding him along their journey together.

Reading story books is their favorite pastime. When Tyler goes over to Grandpas house -- he quickly tells Grandpa where to sit on the couch because at least four or five stories are to be read. Grandpa is very quick to point out that Tyler must go into the bedroom and get those books and bring them to the couch before they can be read. Tyler has work to do and he quickly gets it done in order to please Grandpa.

This afternoon as I entered Tyler's room in the rehab center -- Grandpa was sitting at the bedside holding Tyler's hand and reading him his favorite story book.

Although Tyler's road to recovery has many twists and turns along the way -- he knows there will always be someone there to make the journey with him.

We could all be so fortunate to be like Tyler.

from one floor to the next

Well Tyler moved out of the Intensive Care Unit into a rehab unit.

He isn't able to wean off the ventilator support just yet. He did well on the trach collar and oxygen assistance. But since the seizure a few days back - his stamina isn't as high as it was in the past.

Now he is in a smaller room one floor above where he was.

The unfortunate part of the move is there aren't as many nursing staff available to help Tyler.

Right now Craig, Christi and I are taking turns staying with Tyler to help make him comfortable and keep him relaxed. Occasionally Carol and Elaine will come up for an hour or two to give us a break.

Tyler's insurance company has authorized two weeks in the rehab unit. I'm not sure what happens after that if he's still on breathing assistance.

My hope is that he'll wean off the support soon and be home where he belongs.

what is a trach?

Throughout the years with Tyler -- we've taken him with us everywhere. He's been camping in the woods -- to the beaches of Mexico -- on cross country road trips in our van and on a flight to visit friends in California.

Many times when we're out-and-about we'll have small kids approach us and start to talk to Tyler asking him "what's wrong with you?" or "why don't your legs work?" or "what's that thing in your neck?"

You gotta love the honesty of children.

The thing in his neck is a trach tube which is a small rubber/plastic tube which slides through a small opening in his neck. It rests gently inside his trachea to allow him to breathe easier.

When he was born so small and fragile in June of 1985 -- he was immediately placed on a ventilator which was connected to a tube running from his mouth into his lungs. It remained that way for three months.

September 12, 1985 is the day he had his second major surgery. The tiny opening in his neck was created so the tube could be taken out of his mouth.

The ventilator was easily attached directly to the trach on his neck and made it easier for Tyler.

The photo above is a picture of two different trachs. The smaller white trach is what Tyler had been using for nearly 10 years. The second is clear and larger in size and is what he uses for breathing now.

Although he isn't on ventilator support at home it is important for Tyler to maintain an airway in case of urgency. In addition, many of his asthma medications can be directly administered into his lungs using this opening.

In the case of extreme need -- it's a nice option to help him breathe.

Only a few times has Tyler had a bad seizure at home where he needed help breathing. For unknown reasons when he has a severe seizure -- he stops breathing. It's nice to know that I can use the ambu-bag connected to a tank of oxygen and breathe for him until the seizure stops. It usually takes less than five minutes then he comes out of it and sleeps it off.

You can see how the tube slips nicely into his lungs and is held in place with trach tie.

what a difference 24-hours can make

Yesterday was one of the lowest points in our lives together. The thought of losing Tyler now was simply too much to bear. We did everything in our power to keep him with us. Something worked because he lived to see another day.

This morning he is back on the ventilator for support. The amount of activity in that brain of his is firing and mis-firing all over the place. He was placed on an increased dose of his seizure medication and two additional seizure medications were added. Rather than take any chances of losing any more brain function -- we figured we would err on the side of caution.

This afternoon Grandpa Carol made a visit to see Tyler at the hospital. He was pretty happy to see him and Grandpa started to read his favorite story books right away. I slipped away to take a 30-minute nap to gear up for the rest of the day.

Upon my return I was pleasantly surprised by the Physical Therapist who had Tyler sitting upright. He has been in a prone position for more that three weeks now and is losing his muscle mass. It was time to get the boy back to work.

He sat with assistance for just less than 10 minutes total. She kept a towel around him to maintain control over his tired body.

In this photo you can see how far the reaction to some of the medications have spread down his shoulders to his arms, across his face and down his back.

A few more days on the ventilator and/or C.P.A.P. and he should be able to wean off the support again.

Craig and I are getting tired. We're at his bedside at least 15-hours a day with Craig not returning home until after midnight many nights. Christi will be joining in the fun when she comes up to the Phoenix area this weekend to give her tired mom and dad a little break. Thank goodness for older siblings.

a day that brought me to my knees

During the course of this illness -- Tyler was placed on some very severe drugs to force him into a drug-induced coma. He was on nearly eight different medications for about ten days or so. During the weaning process of getting him off the drugs we noticed some odd behavior in him that we hadn't seen before. He began to shake like a person who was affected by Parkinson's Disease. He couldn't control his hands, his feet or his shoulders. He couldn't pick up his toy and he couldn't hide his eyes to play peek a boo.

The photo above shows the amount tubing that is inserted into his right arm. There are three lines in this one I.V. to allow numerous medications to be administered at once.

Today began as a good day. Talk about going home this afternoon was happening and all Tyler's peeps were lining up to help him get home.

Then something happened.

As he was taking a short nap I was sitting next to him holding his hand so he could have some reassurance.

Suddenly I realized that he wasn't breathing. I gave him to the count of five, hollered his name to see if he was just very tired. Then I witnessed his eyes roll backward into his head and his heart monitor went flat.

I quickly ran out of his room to get the attention of the medical personnel but they were already on their way to his room. They saw on the monitor what I had seen in his room.

The hollered his name loudly to him, hit him on the chest and grabbed the ambu-bag to start resuscitation. Someone called for the code cart. All I could do was to go over and hold his hand while I called Craig on the phone to come to the hospital right away.

Tyler came thought the ordeal after a bit of work. Soon after his heart rate shot up to 180 beats per minute and his blood pressure went a bit too high.

With additional medications both the heart rate and the pressure came back to normal limits.

Following a C.T. Scan and an EEG of his brain -- it was determined that the area of his brain which sustained an injury at birth was firing electricity in random patterns throughout his brain. Apparently the brain forgot to send electricity to his heart so it stopped beating.

With some additional medications and numerous blood tests -- it was shown that his seizure medication had fallen to dangerously low levels during this hospitalization and some of the additional medications may have interfered with his seizure meds.

In addition, many of the coma-inducing medications should have been decreased through a weaning process rather than discontinuing them all at once.

What's important is that Tyler is ok. He'll have an additional three days in the hospital just to make sure the seizures are under control.

June 10, 1985

For many of you reading this blog about Tyler -- you've just recently gotten to know Tyler through his current illness.

I'd like to take you back. I'd like to take you on a journey that has wound up being the journey of our lives.

We were a young family. Both Craig and I were only 24-years old, our daughter Christi was 10-months old and I was five months pregnant with Tyler.

It was a beautiful Saturday in June 1985. The three of us were on a family vacation driving our 1974 Chevy Van from Arizona up the Pacific Coast Highway to Washington State. Our innocent plan was to see a few sights along the way, stop and see Mt. St. Helen's (which had just erupted five years earlier) and visit with my great-grandmother.

Our first indicator that this would be a life-changing event was our first night in California. A storm was moving through the western states and we had gotten caught in this violent storm. Being very young we really didn't plan ahead. Personal computers weren't available and long-distance telephone calls were very expensive. In order to reserve a hotel room for the night - one would have to use the yellow pages and a home telephone and call numerous businesses. So - we took our chances and drove in the hope of finding a room at a local motel to sleep that first night.

This was not to be. In addition to not having a bed to sleep in -- our baby daughter had developed an ear infection. We were driving through the many cities of California with a screaming, feverish baby wailing in the back seat -- we came upon a Denny's Restaurant and thought we could sleep there until morning.

We tried to settle in so we could all get some rest but the rain was pounding the roof so hard that our little baby kept waking up from the ear pain and the noise. In addition, the sky-light that my husband installed in the roof of the van was leaking terribly so we were all sleeping on a soaking wet mattress. We were woke up by the light of a flashlight being shown through the windows. Apparently this Police Officer standing outside our van wasn't keen on us sleeping in this parking lot.

So we packed our screaming baby and headed on down the road. We came upon a small business in the quaint town of Carmel and hunkered down for the night. Finally getting a few hours of sleep we headed up to San Francisco in the morning in search of an old high school buddy of my husbands. But more importantly I was in search of a Pediatrician who could help my screaming baby.

Success! The ear infection was diagnosed, medication was given and we were on the road again.

It was an absolutely beautiful drive up the coast. The Pacific Coast shoreline in summer is a must-see for everyone.

Astoria, Oregon. We got pounded with rain again. Apparently four inches within an hour had hit the coast and we were driving the old van up the highway trying to stay on course. We found a room for the night, had a hot meal and a hot shower and laid down to rest.

I was tired. I was irritable. I had a severe back ache and knew I was having contractions. I also knew it was June and baby wasn't due until September so I didn't think anything would go wrong.

We drove through Oregon to Washington and headed up the highway to Mt. St. Helen's volcano to see the beautiful destruction the eruption had caused five years earlier. Soon we were watching a huge, dark thunderstorm move in from the west. It was the most beautiful storm I had ever seen. I was so high up on the mountain that I could see this storm in it's entirety.

As we were driving down the winding dirt road to head to Yakima, I realized that I was going into labor with Tyler.

The drive to Yakima took about two hours through the dirt roads, the rain and the mountain passes that took so long to get through.

Just as we got settled in with my family I left our daughter with great-grandma and we headed to the local hospital and tried to figure out why I was in labor because my baby wasn't due for another 16-weeks.

Tyler was born just hours later weighing in at 800 grams (1 lb. 12 ounces) and measuring 13" long.

I still didn't understand what lay ahead for us. I innocently thought that, although he was small and early, that I'd just pack him up and drive him home with the rest of our little family. Unfortunately I learned very quickly that Tyler was gravely ill.

It was suggested that we make funeral arrangements soon as our little boy would not survive beyond the first few hours of life. He was born at 3:30 in the morning but would not live to see his first sunrise.

He survived and we began living our lives in increments of time.

Every hour that went buy was another hour of success for Tyler.

Every day that went by was another day we had our son.

Every week that went by was another week Christi and I were in Washington while Craig was in Arizona.

This illness had caused a separation in our young family. I stayed up north with the two babies and my family while Craig drove home to go to work and take care of the house. We had no idea how long we'd be separated.

The photo you see above was taken in May, 2007. We were celebrating Christi's graduation from the University of Arizona, Tyler's graduation from Coronado High School and our 25th anniversary of marriage. It was a great celebration.

I'll post more Tyler stories throughout the weeks ahead so everyone can know and love Tyler as much as I do.

every five minutes . . .

The road to recovery is well underway but still has a few speed bumps along the way.

This morning Tyler had a rough start of things. In the past 36-hours he's only slept for a total of about 20 minutes at a time. The steroids he's been taking for the past three weeks to help his asthma also keeps him wired.

He'll fall asleep for a few minutes then wake up to need suction, a breathing treatment, milk or a diaper change. It's tough to need sleep when you're in the hospital cause nobody will let you.

This afternoon his naughty hand struck again. During my five minute absence from his room he managed to get his naughty hand over to the arterial line that was just placed.

As I walked back into his room he pointed to his arm and handed me the wire. As I looked down on his bed sheet -- I couldn't help but notice an 8-inch pool of blood and his arm was literally draining out of the vein. So I had to hold a washcloth on his arm while trying to summon the nurse. Respiratory finally heard my plea for help and ran and got Tyler's nurse.

Poor Tyler. He doesn't quite understand that all the tubes and wires are really there to help him. All he knows is he wants them off his body.

naughty hands

Tyler's naughty hand has gotten him in trouble for years.

For many of you that aren't familiar with his 'naughty hand' let me fill you in.

Tyler's right hand is often times referred to as his 'naughty hand.' It is a separate being from himself. Whenever something would get broken, hit, smashed or ruined by Tyler -- he would offer you his right hand as evidence that IT was the reason for the breakage. Tyler actually had nothing to do with it. It was all the 'naughty hands' fault.

Well -- last night during the wee hours of the morning -- that 'naughty hand' struck again. It pulled the trach out of Tyler's neck and the arterial line out of Tyler's wrist. All he could do was to offer up the 'naughty hand' as proof that he had nothing to do with the terror.

Hopefully this is evidence that Tyler is on the slow road to recovery. If the 'naughty hand' is feeling better -- I'm pretty sure that Tyler is feeling better.