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.