the sweet sound of homecoming

During the past 31 days my focus has been to get Tyler better in order to bring him home. Well today was the day that my wish was granted.

Of course there was the usual 'hurry up and wait' scenario when trying to get Tyler's posse of doctors together in order to write discharge orders, decide on home supplies, amount of medications to continue with and how much care he would require at home.

Blah, blah, blah. Just send the kid home for goodness sake -- I know what to do. I've been doing this for nearly 23-years and I think I can continue on.

So Craig arrived just after 1 p.m. this afternoon for the final push to get everything out of Tyler's room. The only item that was missing was the portable oxygen needed to supply Tyler during the drive. Of course there is a portable tank sitting in Tyler's closet. Craig brings it with him for the drive home.

In true Craig fashion -- as he's lifting Tyler into his wheelchair -- the tank of oxygen falls off the back of the chair. I immediately hear a loud hissing sound coming from neck of the tank. Oops. The tank is now broken. Craig quickly places his thumb over the hissing sound in order to not allow anyone else in the room to hear it. If there is no oxygen to drive home with Tyler -- he doesn't come home with us.

We very quickly head for the elevator to load Tyler into the van for the quick five minute drive home. We're not going to let a little broken oxygen tank stop us from bringing him home finally.

We arrived without incident. He's home. He's safe and he's happy.

good news from the doctor

Tyler can really sleep through almost anything.

This afternoon the pulmonary doctor arrived with good news. Tyler's large sized trach is being replaced with a smaller trach. This is the next step toward going home.

Tyler must get get used to breathing with an adult sized trach. He's had a pediatric size for years now.

As the doctor was talking to us about Tyler and the past five weeks of hospitalization -- he said "Your son has been the most challenging asthmatic I've ever experienced. He has pushed me to my professional limit."

I'm not exactly sure if this is good news or bad news.

Nonetheless -- I'm just very happy that Tyler has done as well as he has given the circumstances.

Tyler got his speaking valve put back on today and he has really enjoyed talking to everyone. "Hi mom" were the first words out of his mouth. Closely followed by "ga-ga."

So as the doctor is giving us the good news about a possible discharge date -- Tyler seemed immune to everything. As long as he has grandpa in the room with him - that's all he needs.

Well, grandpa and a good nap.

we're counting down to homecoming

Before Tyler can come home from the hospital there are a few criteria that must be bet to satisfy his doctors.

One is that he must be off all ventilator support for at least 72-hours.

Second is that he must have a smaller trach placed into his neck and be able to breathe easily for 48 hours.

And third, he must have enough stamina to remain in a sitting position for a short period of time.

We're working toward all those goals with the help of everyone here.

Craig and I are sharing the hours at his bedside along with sister Christi and gramma and grampa.

Christi is good at keeping him entertained with Sesame Street videos on the computer. Grampa is always for some story books.

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.