Starting the New Year in Good Health

The New Year has begun on a very healthy note for Tyler.

He enjoyed the Christmas Holiday by celebrating with his cousin and his visiting sister who was in town extended period of time. The New York Blizzard of 2010 kept Christi here longer than anticipated.

Tyler's health has been improving steadily and his attitude is better-than-ever. Nothing gets Tyler in a bad mood. He stays happy, joyful and full of naughtiness even when he's not feeling well.

Tyler is back in his day program two days per week. He attends outings, plays games, visits with his friends and enjoys every day. Other days he stays home and plays around the house.

Here's to a healthy year ahead of us! Hopefully all his asthma-related health problems will be kept manageable.

Tyler is doing very well -- thank you...

Tyler has done very well since coming home from the hospital this past Wednesday.

He had surgery to redesign a tracheostomy which had been placed in his neck.

The photo shown above was taken last weekend when we took him and our grand-daughter to Sea World. While there they both had the chance-of-a-lifetime to visit with Elmo of Sesame Street fame.

Tyler is scheduled to have the sutures removed from his neck next Monday then will resume his normal schedule of school and playing.

Tyler Just Hangin' Out

Tyler came through the surgery with flying colors.

He had a size six trach placed into his neck last night and soared through the procedure without any problems.

He'll stay in the I.C.U. for at least two days to ensure success and to (hopefully) reduce the amount of exposure to infection.

This photo was taken this morning as he was waking up. We just finished reading "Are You My Mother?" by P.D. Eastman.

Surgery or Not?

Following 48-hours of confusion -- a surgery date for Tyler has been set - canceled - set again - canceled again - and set once more.

It all began with a simple naughty hand. Unfortunately for Tyler - the naughty hand struck during the middle of the night which caused irreversible damage.

Long story short - the small hole in his trachea holds a curved plastic tube which allows him to breath easily. It also allows me to administer his breathing medications directly into his lungs. This gives the best benefit of the drugs.

When the tube came out of his neck and remained out for more than a four-hour period -- the hole in his neck closed up.

Today Tyler and I spent the day at Scottsdale Healthcare-Osborn Hospital with the hopes of him having surgery at 4pm.

Literally at 3:55 pm a new Ear, Nose and Throat physician came into the room to evaluate Tyler and prepare for surgery. Being he was a new physician to care for Tyler - he had a long list of questions. He came to different conclusion than previous physicians which, in turn, canceled the surgery.

What will happen now is Tyler came home with me Friday evening with a surgery date scheduled for Monday, September 13 at 6pm.

What the new physician is planning on doing is to create a new trachea for Tyler using cartilage from his neck. He will also decrease the amount of scar tissue surrounding the hole which may cause ongoing discomfort for Tyler.

This new trach will be considered a 'permanent' trach where all previous have been considered 'temporary.' If, in the future, this trach comes out it won't close in a matter of hours. It would take weeks for the hole to close. Using the cartilage instead of skin to build the hole in his neck causes this effect.

If all goes well -- Tyler will stay in the hospital for two days following surgery. We should be home by Wednesday or Thursday next week.

As you can see by the pictures posted above -- Tyler is taking it all in stride.

The Naughty Hand Strikes Again

Hmmm -- Sometime during the nighttime hours -- Tyler's Naughty Hand decided that all was going too well in Tyler's life.

So in an attempt to keep us on our toes -- the Naughty Hand took the trach out of his neck, threw it across the room then it and Tyler went back to sleep.

The small hole in his neck closed without the trach tube in place. When mom discovered the problem and tried (in vain) to put it back in she soon realized that a trip to the hospital was in her near future.

We're heading there within the next half-hour so I'll keep you in the loop.

All is going well...

Just a quick note to tell everyone that Tyler has had a great summer. He's stayed healthy, happy and playful.

As we head into the Winter season - we're taking all precautions to ensure he stays that way.

Tyler

Well -- he's been admitted back into the ICU at Scottsdale Osborn. He had a sinus infection that wouldn't clear up and his asthma kicked in.

I'll post more soon with some photos and updates.

:)

Story Time . . .

Every day at lunch time -- Tyler and Arlington wait patiently for Craig to come home to eat, rest and read a mid-day story.

Tyler and Arlington take turns choosing which story is to be read.

Today it was Arlington's turn to choose. She picked 'It's Not Fair' featuring Ernie and Bert.

Tyler continues to improve every week. Except for a bit of residual leg weakness -- Tyler is nearly back to health.

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.