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.