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.