feeling better all the time

Craig, Tyler and I recently attended a luncheon where Tyler received an award and recognition for being the 'Best Participant' in his day program.

Throughout the event I couldn't help but watch Tyler an see how far he's come since April of this year.

As Tyler was being celebrated in front of the audience -- he was clapping at himself and saying 'woo-hoo' the entire time.

He's very proud of himself for fighting as hard as he did this summer.

We're very proud of him too.

Life without Tyler just wouldn't be complete.

Tyler is the boss now

Tyler has decided that enough is enough.

He has taken it upon himself to remove the BiPap support at nighttime. He's refusing to keep the small tube attached to his trach. So -- we have no other option than to leave it off of him.

He's been off nighttime support for nearly 10 days now and is doing very well.

In addition to removing himself from the BiPap -- he as now taken the trach collar off.

The trach collar is connected to a small tube which supplies a small amount of supplemental oxygen.

When he came home from the hospital this last time he was needing five (5) liters of oxygen in addition to 12-hours of support at nighttime.

I guess Tyler knows best. His O2 saturation's are staying in the mid to high 90's and his many doctors are pleased.

The O2 saturation level is a measurement of how much oxygen is being supplied to the body at any given moment. A small sensor is temporarily attached to his fingertip and a light reads the oxygen level. Craig and I generally run from 97 to 99% oxygen levels on room air - which is 21% oxygen. The additional oxygen that Tyler is receiving bumps him up to about 23% - 24% oxygen.

He's come a long way from earlier this summer and our hope is that he continues to improve.

The real treat for him this past week was when he got to return to school for two days in a row. Although he only stayed for two hours each day he was very happy to see all his friends.

reunited

Following an extended vacation to the northwest -- grampa and Tyler have been reunited.

Grampa came over on Friday afternoon and Tyler was absolutely thrilled. The first order of business was Tyler telling grampa where he had to sit and which story book he had to read.

Tyler proceeded to pinch grampas arm, pull his hair and pop him in the nose. These are common games for the two Bell boys to play while visiting with each other.

You can see that Tyler's progress is continuing and his smile tells everyone how happy he is to have his grampa back.

Tyler has been weaned down to three liters of O2 during the daytime. The BiPap machine is still hooked up at nighttime from about 9pm to 6am.

Tyler is doing well.

Tyler Speaks!

For more than four months Tyler hasn't been able to speak because of the larger sized trach tube that was placed in his neck during his first hospitalization in April.

Craig and I took Tyler to to see the pulmonary doctor this past Monday for his second follow-up visit since his last hospitalization.

"Tyler - you are doing remarkably well. You're probably four to five months ahead of where I thought you'd be right now."

Those were the words his doctor said to him when he was through with the examination.

So - Tyler got to have a different kind of trach tube put in. The first trach had a 'cuff' on it. The cuff would be inflated with a small tube and syringe whenever he was placed on the ventilator. The cuff would be inflated to the size of the inside of his trach which wouldn't allow any of the pressure support to be released through his nose.

The new trach that was places is 'cuffless' which now allows a small amount of air to pass through his trach and over his vocal cords. And -- voila! Tyler speaks!

This may not seem like much of an accomplishment but it really is.

What it means is that the air being exchanged in Tyler's lungs is doing so at a rate that allows some air to escape.

His lungs are improving and his attitude improved 100% when he got to speak again.

The voice he has now is a little bit hoarse and crackly and a little bit scratchy. He surprised himself when the speaking valve was but back onto his trach.

In the video you can hear him say 'mom' 'hi' and 'e' -- the 'e' sound is for the name 'Petey' which is the name of a little puppy in his favorite story book.

Now he is yelling, screaming in the hallway and pulling his own hair trying to get us to laugh at him.

He's about 80% back to where he was before his long illness.

The work ahead of us is physical therapy to help him regain the use of his legs for crawling and pulling himself up into and out of bed.

improvements every day...

Well -- this week Tyler has decided that enough is enough.

One day he sat up, crawled into the hallway and started yelling to play with his favorite ball.

His strength is returning to his body and his naughty personality has himself getting into trouble again.

The kitties -- Allie and Bernie -- thought they were safe but he's after them again.

breakfast for Tyler

This is truly better living through modern pharmacology.

Tyler's day begins just like everyone else. Wake up, stretch, give mom a kiss, hunt down his favorite buddy Wrinkles then smile.

As many of you already know -- Tyler has many special needs.

His day starts at 7:00 am with three (3) breathing treatments. The first treatment is a medication that opens the airway passages in his lungs. The second and third treatments are different types of steroids which reduce inflammation.

Following each treatment are two additional medications -- also different types of steroids -- each has its own addition to the mix. These are administered with an ambu-bag and aerochamber which attach to the trach in his neck and are literally pushed into his lungs.

Then comes the 'sniffer' which is an allergy-reducing medication which is squirted into his nostrils. Tyler's job is to then sniff as hard as he can to get the drug into his sinuses. Of course Tyler finds this very amusing and will sniff for about five minutes trying to get us to laugh about it.

Breakfast includes a can of Nutren 2.0 -- which is a 500 calorie soy-based formula -- which gives him additional calories and vitamins and minerals to help him maintain his health and maybe gain a little weight. He needs five cans of this per day in order to maintain his weight and meet his caloric needs.

Along with his formula comes the many types of additional medications. The liquid form of the drugs are easy to give because they slip into his formula without any bother at all. The pill form of his meds need to be crushed with the little pharmacy drug-crushed then added to his formula.

All of this is flushed with about six ounces of water.

That's just his breakfast. He needs his medications at various times throughout the day and night. In order to keep up with his schedule - I simply had to make a flow sheet to track his meds, milk, treatments and daily needs.

This schedule allows both Craig and I to see in a glance what (if anything) needs at any given time during the day.

The schedule of steroids is a separate list. The steroid dose began very high (following his last hospitalization) then will be tapered off to a lower dose. When Tyler reaches the dose where he begins to crash - then the dose will be raised and maintained.

All these lists and schedules seem very 'Virgo' of me -- but believe me -- there is no other way to keep track of Tyler's needs without them.

A list of Tyler's medications:

Xoponex
Pulmicort
Perforomist
Flovent
Flonase
Singulair
Zyrtec
Tegretol
Keppra
Clonazepan
Vitamin C
Prednisone
Serevent
Advil or Tylenol

the tortoise and the hare

Tyler continues to make small improvements every day. His recovery this Summer reminds me of the fable "The Tortoise and the Hare."

Tyler is making slow but steady progress. When we try to rush his therapies or decrease his medications too quickly -- he will have a small setback.

This week his strength has improved quite a bit. We've been putting him in his chair and letting him go into the hallway to play with his favorite ball and buddy -- Wrinkles.

By sitting for longer periods of time his breathing capacity is increased and the muscles in his midsection have become stronger.

He has gained most of the weight back that was lost during his hospital stay.

What he has left to improve on is his lower body strength and his breathing. He continues to use the BiPap machine (similar to a ventilator) during the nighttime hours. By allowing his respirations to rest -- he gains strength during his sleep.

The nurses who have been helping us care for Tyler have taken a break for various reasons. This is allowing Craig and I to be his caregivers 24-hours per day. Believe me -- it's nice to have a little help when his medical needs are high. Sleep is overrated anyway.

The photos above were taken on Saturday when Craig decided that Tyler's hair was getting a bit too long. I had purchased a home hair cutting assortment at Target so Craig had a good time making Tyler look like a little Marine. If you look closely at the first photo - you can see Tyler's buddy -- Ernie -- in the background supervising the salon session.

The difference between a good hair cut and a bad hair cut is about two weeks.

the days go by so slowly

Not much new to say. Tyler has been pretty wired from all the high doses of steroids he has to take to keep his asthma under control.

One of the side effects is the steroids may cause anxiety attacks for those taking such high doses.

Unfortunately Tyler has been experiencing these anxiety attacks for the past few weeks. He simply doesn't understand what is happening to him. His heart rate rises up to the 140's, his respirations rise to the high 20's and low 30's and his breathing becomes very labored.

The only way to calm him is to give him an anti-anxiety medication which causes him to become very sleepy. So far, one-half a tablet will keep him relaxed. I really hate to give so much medication to such a fragile little guy but I simply cannot watch him have a panic attack.

Otherwise he is doing pretty well.

The pulmonary doctor has stated that Tyler has entered the end-stage of his lung disease. I'm not sure exactly what this means for all of us. Tyler has always been so strong and resilient and has battled every part of this disease with vigor. I just hope he gains enough strength back to keep fighting.

I guess time will tell.

a little set-back

Well -- as Tyler was being weaned from the steroids (which keep the asthma under control) he wound up back in the I.C.U.

Just two days after being completely off the medications he crashed pretty hard. His respirations were very labored, fast and causing him a lot of discomfort.

Obviously we got him back to the Emergency Department where he was quickly placed back on a ventilator and given high doses of steroids.

Less than three hours later he was acting as if nothing had happened.

Apparently his dependency on steroids is much more severe that originally thought.

So, he'll stay on steroids for another six to eight weeks while his posse of doctors try to figure out the next course of treatment.

I'm told I can bring him home Wednesday morning. So I'll be down at the hospital at 7:30 following shift change to gather my son and drive him home.

he's growing a beard

OK - so he's not growing a beard. Craig and I have just been a bit lazy when it came to shaving Tyler when he was getting a bath.

Then Tyler was constantly pointing to his beard and telling us it was 'no good' so it came off last night.

I wanted to share with you all my little 'tall, dark and handsome' young man who perseveres through everything.

he's doing better

Not much to say other than Tyler seems to be getting a little bit better each day.

He's a little bit naughty and a little bit nice.

All he seems to want is to have his story books read to him and to play with the squiggle ball and his 'Wrinkles' while looking out his bedroom window.

home at last

Well -- Tyler came home this afternoon.

He's so happy to be here.

Woo hoo!

He's doing all his old tricks.

Fist shaking.

Woo hoo to all the baseball players.

Telling Allie the kitty to get out of his room.

And -- most importantly -- giving lots of kisses and hugs.

Here's hoping he stays here for awhile.

I'll post more soon when I have a moment to think.

he needs to come home . . .

Well Tyler is being Tyler. And anyone who knows Tyler also knows that means it's time to come home.

Tyler is pulling the heart monitor leads off his chest -- he won't leave the trach collar on -- he doesn't want to watch T.V. -- he doesn't want to have his milk in his tummy -- he doesn't want anything!

He's cranky and trying to climb out of bed.

Actually he's doing much better. One of his medications had to be adjusted and this has helped a lot.

Unfortunately he had a two-minute seizure on Tuesday morning which delayed his homecoming. He was scheduled to be sent home yesterday afternoon.

We'll wait and see if today will be the day to come home.

Fingers crossed!

another round of asthma . . .

Well -- Tyler was home with us for exactly one week and doing very well.

Then Friday morning he woke up following a very quiet, peaceful night.

And BOOM! The asthma hit him like a rock.

We got him back to the hospital and onto the ventilator for a short time and the asthma seemed to quiet down a bit.

Now he's back on the mist/O2 collar with C.P.A.P. at nighttime.

We just need to figure out what is causing the asthma attacks or bronchospasms he is experiencing.

All medications have remained the same and our household is just as it has been for the past 20-years.

Hopefully we'll get this figured out soon.

Tyler is not a happy camper right now. He's cranky, irritable and just plain grumpy.

Wish us luck.

take a deep breath -- hold it -- now relax

OK -- I've taken a deep breath -- I've held it for the past two months waiting for Tyler to get better -- and now I can begin to relax.

I can honestly say that I feel like Tyler has made it over the hurdle placed in front of him and he is truly getting better and better with each day that passes.

Yesterday was his first day to realize that he DOESN'T want to stay in bed any longer than is required for sleeping.

He suddenly sat up all by himself, tried to climb out of bed and was insisting on getting into the hallway to play with his favorite toys.

It took a bit of coaxing to convince him that he still needed a bit of help.

By the end of the day he is back to crawling (almost) by himself, climbing (almost) into bed by himself and watching baseball on the couch with dad. He even took the last little sip of beer from dad's bottle. He didn't like it but it made both of them laugh.

Hmmm. The Diamondbacks won last night. Maybe they need Tyler to watch more of their games to send them some luck.

We've decreased the amount of oxygen that Tyler has needed to keep his O2 saturation up and he's sleeping much less. I think this last round of antibiotics is just what he needed to fight what he's been fighting.

It's nice to have him home. It's even nicer when he's being naughty, getting into trouble and telling me to 'get out' of his room.

a little bump in the road

Well -- Tyler has been making small improvements since coming home from the hospital last Friday.

However, this morning he awoke with a low-grade fever and kept telling me he was hot while holding on to his head.

Two hours later -- sure enough he began to have a foul-smelling discharge from his trach with thick secretions being coughed up.

I called the doctor right away who, in turn, called in an antibiotic for Tyler to get started on right away.

Hopefully we caught this early enough that he won't have to go back in the hospital.

Keep your fingers crossed.

The photo above was taken last October as Craig and Tyler were cleaning out the inside of a pumpkin. You can see that Tyler found this to be very amusing.

home watching baseball

Well -- Tyler is home and doing well.

He has a ways to go before he can get his strength and stamina back. He's currently sitting up in the office chair three or four times a day for about 30 minutes each time.

That doesn't sound like much progress but remember -- he's been lying in a hospital bed for over six weeks now and his strength is low.

Craig moved a T.V. set into Tylers room so they can watch baseball while recuperating from the asthma ordeal.

You can see that Tyler has lost a little bit of weight but he's happy being home with dad.

I'm happy that he's happy.

getting better each day

Well - what can I say?

Tyler continues to improve a little bit every day. His strength and stamina are slowly getting higher.

The one thing that hasn't faded is his smile and his jest for life.

Here is is lying in the hospital bed after Dad read him "The Puppy Who Wanted a Boy" and all he can do is smile.

Even with six EKG wires attached to his chest, a blood pressure cuff attached to his arm, an IV in his wrist and the CPAP machine attached to his trach -- he always has a smile for anyone who says 'hi.'

You gotta love this kid.

happy birthday Tyler

Another birthday for Tyler!

He's 24-years old now. Every day we've spent caring for him has been worth the little smile on his face.

Unfortunately he had to spend this birthday in the hospital.

However, in true Tyler fashion -- he had all the female nurses doting on him all day.

Just after lunch I brought in a yummy chocolate cake with whipped cream icing. The doctors, nurses and I sang "Happy Birthday" to him and he lit up like a Christmas Tree.

He kept pointing to himself just to let everyone know whose birthday we were celebrating.

Earlier in the day -- Craig and I started at the hospital to get his special day off to a good start.

This photo is of Tyler hamming it up for the camera. Of course his buddy - Wrinkles - had to be in the picture with him.

small gains

First of all I need to apologize for not posting for a few days. The computer at my house hasn't been able to receive a signal from Cox Communications.

Tyler was home for a day -- experienced another severe asthma attack and had to come back to the hospital.

Between the doctors, nurses, respiratory staff and Craig and I -- we're racking our brains trying to figure out if something in our home is triggering the asthma.

Well -- apparently not. Last night while Craig was at the hospital with Tyler -- he suddenly experienced another asthma attack. Staff members quickly put him back on C.P.A.P. and he came out of it quickly.

That shoots down the 'environmental' issue. The doctors were actually thinking Tyler could be allergic to my kitties and they would have to go away. :(

Well since there aren't any kitties in the hospital -- Allie and Bernie will live to see another day in the Bell house.

Now we're talking about a home-ventilator program to assist him as needed. If he needs C.P.A.P. at nighttime -- he'll get it. If not, he'll stay on the mist collar.

Either way he'll be home with us were he belongs.

The photo shown above was taken during a 'play' session between Christi and Tyler. Christi would often times dress Tyler up in girl clothes. Obviously Tyler didn't give a rip. As long as someone loves him -- he's a happy boy.

being naughty

Well Tyler certainly surprises us all.

The past couple of day in I.C.U. have helped him to become stronger, gain stamina and regain some of his strength.

In addition, his naughtiness has returned. That is the sure sign that he is on the road to recovery.

He has found the buttons on his bed which allow the head and the foot of the bed to rise and fall. This is certainly amusing when anyone is in the room to watch him. The nurse call light is also a great source of entertainment.

As I was sitting with him today I couldn't figure out why the nurses kept returning to the room asking what we needed and if everything is OK.

Then I spied the little naughty hand playing with the call light. Just as he was ready to push the button I asked him 'Tyler - what are you doing?'

Of course he offered up his naughty hand as proof, once again, that he wasn't responsible for the mayhem. It was the naughty hand that got him in trouble.

It's nice to see the naughty hand return.

tyler, tyler, tyler

For all of you who are following this blog to keep track of Tyler's progress -- thank you.

The photo shown above was taken during a visit to Tucson to visit his sister Christi. Apparently he didn't want to sit next to her.

Tyler is doing better today. The C.P.A.P. machine was turned off this afternoon and the mist/oxygen collar was put back on. He was breathing very well throughout the hours and during a small nap.

As he was resting I was watching his sleep and wondering 'why Tyler' -- why does this sweet little guy have to endure so much? Well, I'll never get the answer to that question.

However, Tyler always seems to come though all of these situations with a smile on his face.

I was also wondering why this family? We all care for him, watch over him and keep his needs first. Just then a medical helicopter was landing on the rooftop above us. Tyler woke up and smiled because he likes airplanes and helicopters as much as I.

Then it occurred to me. Every time a medical helicopter flies overhead another family is affected my a medical crisis. Every ambulance that goes screaming by your car or house another family is affected. Every car accident will affect another family. And so on and so forth.

So, it's not just our family. It's every family. It's the families of the recent plane crash in the Atlantic Ocean. It's families throughout the world who are affected by medical events which will change the course of their lives forever.

To have the course of ones life changed isn't necessarily for the worse. Tyler is a joy to be around and will always give you a smile and a hug.

another setback . . .

Well Tyler made it home two days before having another serious asthma attack. He seemed very happy to be in his own bedroom playing with his familiar toys.

He's back in ICU on C.P.A.P. which the doctors feel will be short-lived. Tyler seems to be experiencing more anxiety or panic attacks when he is short of breath. This seems to compound the problem by making the attack seem worse for him.

We'll keep by his side and talk him through his little issues. He's happiest with his favorite dog 'Wrinkles' and his favorite story 'The Puppy Who Wanted a Boy."

Many of the doctors feel this is just a speed-bump in the road but will make it through with just a bit more time.

Keep hopes up and send well-wishes for Tyler.

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.

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.

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.

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.

Tyler's Update

As many of you know by now -- Tyler was admitted to the Intensive Care Unit (ICU) the end of April.

He had a severe asthma attack that Craig and I couldn't manage at home. We took him to the Emergency Room were he was quickly evaluated then admitted.

During the first few hours he was sedated with anti-anxiety medications to try to get his lungs to relax enough to move air. This attempt was unsuccessful so he had to be placed into a drug-induced coma using paralyzing drugs, pain relievers, anti-anxiety meds and others. It took extremely high doses of medications to get him to relax but it finally happened after about 36-hours of trying. In addition, he was placed on a ventilator because he was completely paralyzed.

Fast-forward to today -- Saturday, May 9, 2009 -- and Tyler has been off the coma-inducing drugs for nearly three days. Because of the high amount of drugs in his system -- he is responding slowly.

In the picture posted above you can see that Craig is reading Tyler his favorite story books while he rests quietly.

Tyler is responding appropriately with works he knows from the book and is giving Craig kisses on the cheek.

It's still a long road ahead for Tyler but like Craig and I have always said:

"If Tyler has the strength to get through this illness -- then we have the strength to get through it with him."

Please bookmark this site and I will post updates every evening to let everyone know how Tyler's progress is moving.

Tyler was dangerously close to not making it through this illness. His energy level is very low and his stamina is slight. Unfortunately he's still not out of the woods just yet but Craig and I remain hopeful.

Big Red / Little Red

I always thought it was very special to have a red-headed, curly-haired daughter. Now our family was blessed again with the addition of yet another pretty baby girl.

Christi will share her secrets of red, curly hair and the importance of sunscreen to ward off the freckles.

I like freckles.