Monday, September 29, 2008

Respiratory Infection and Controversial Drug


Joshua came down with a bad cold - probably an upper respiratory infection the day after his 12th birthday party.

He started running higher fevers, got pretty dehydrated, had runny nose and was pretty congested. We even had to give him oxygen Tuesday night all night - still his oxygen concentration in his blood was only reaching 94-96 percent with 3 and a half liters of oxygen through his ventilator. And that was even after the nurse changed Joshua's trach - so it was very clear. He was getting high enough volumes of breaths. Anyway, altogether, this made us worry he might have pnuemonia. So, I called the doctor Wednesday morning and got him an appointment to go see him.

The doctor sent Josh for chest xray, sputum culture and bloodwork. He also wrote a prescription for us to use - IF it turned out Joshua did NOT have pnuemonia. It was for Gentamicin and Normal Saline. He also sent us home with a nebulizer that we would use the medicines in - so we could give it to Josh to breathe in through his trach.

Luckily, that evening, the doctor called with good news about the chest xray - it was clear - meaning no pnuemonia. So, I needed to go get the prescription filled. Well, that turned out to be much more difficult than I figured.

Our pharmacy -HEB - did not carry the medicine. They said if they could find it somewhere, it would take them a couple of days to get it in. I said I'd try somewhere else and went home. It was already almost 8PM. So, my sister looked up some 24 hour pharmacies in the area and called to ask if they had it. None of them did. So, we gave up for the night.

Thursday, I went back to HEB to see if they could just go ahead and order it. They said after they looked it up, their whole-saler did not have it. They suggested I try an independent pharmacy near a hospital that had a bigger selection of hard-to-find medicines.

I went there - they didn't have it. I tried another pharmacy near another hospital - nope.

So, I went home and decided I would call before trying anymore - since they were all over half an hour away.

Finally - around 6PM, I found a pharmacy WAY across San Antonio that carries Gentamicin. I faxed over the prescription and Joshua's Medicaid card, loaded up the kids and we went across town to get it. There were bad wrecks along the freeways so we had to find back roads to make it across the city.

We got there just before they closed at 7PM. It was too late for them to run the Medicaid card to get payment and they did not accept our other insurance (Cigna), so we had to pay with a credit card - about 60 bucks. Of course, I was not going to leave empty-handed after all this, so we paid and left. And Josh got his first treatment late that night.

We could not find a mask that is supposed to go over the trach - the best we could find was this pediatric mask that is designed to go over a mouth & nose. It is designed to look like a fish:

The medication comes in bunches of tiny little bottles that look like this:

you use a syringe like this:

to get the medicine out of the bottle and squirt it into a little cup attached to the nebulizer machine (fits just under the mask).

You mix the Gentamicin with Normal Saline that comes in "bullets" like these:

A good friend of ours from church - after hearing that Joshua was taking Gentamicin - informed us about some dangerous side affects some people have suffered from taking Gentamicin. She directed me to a website known as Wobblers Annonymous.

The site starts off with this statement:


WOBBLERS are people who have been damaged by gentamicin. Gentamicin is a very powerful aminoglycoside (antibiotic) that can have devastating side effects

It mentioned the drug can cause deafness and damage the system you use to give you balance.

That was enough to worry me. Josh has been through enough. I don't want to cause him further health troubles.

So, I looked all through that website and went on to search through most everything I could find on the medication. Everywhere I looked for word of trouble with the drug, it only told of problems associated with taking the medicine as an injection.

Joshua - though he has a syringe to use with the medicine - DOES NOT taken it as an injection. He inhales fumes of the medicine - and even then, it is diluted a great deal through normal saline.

Noplace online did I find mention of any negative side effects from using Gentamicin in this manner.

He has already had 14 of the 30 treatments (3 per day times 10 days) he was prescribed, and so far we have not noticed any problems. We will continue to keep a close eye on him. If we notice the slightest problem with his balance (or anything else) we will discontinue and contact his doctor right away.

Tuesday, September 23, 2008

Houston on Hold, Josh sick and James away


As you may know, Joshua and I were to travel to Hurricane torn Houston this week so Joshua could undergo more testing - including an extensive MRI under general anesthesia. Texas Medicaid Transportation agreed to send travel money and would also pay for a motel room, HOWEVER, there was not a hotel or motel room to be found within a 60 mile radius of the city.

Speaking to the Concierge of Memorial Hermann Hospital today, she reported there are still 1 Million plus people in Houston without power, traffic lights on the blink, and the hospital full of people - some from Galveston and other areas along the Gulf coast.

Also, Joshua has come down with a head cold - a pretty nasty one. He started complaining of a sore throat on Sunday. By Monday, he was running fever and very dehydrated. I kept him home from school and had him rest and drink extra. He seemed to be doing a little better, but was still sniffy nosed and had a little fever this morning. So, made the decision to keep him home at least through Thursday of this week (his regular school nurse would be away at special classes Wednesday and Thursday - and I worried about leaving Josh, with a cold, with a nurse not familiar with him). Tonight, Joshua's blood oxygen level dropped some and we had to put him on oxygen. I pray that does not mean he is developing pneumonia. Anyway, his cold helped me arrive at the decision NOT to go to Houston this week - but to wait and reschedule.

I let the hospital and Texas Medicaid Transportation know we would not be able to go now. The tests have now been rescheduled for Monday and Tuesday before Christmas.

Meanwhile, we said goodbye to James today. He drove to Odessa to stay with his parents and work out of the Odessa office a couple of weeks. James wanted to spend as much time as he could with his dad - especially since doctors have indicated his cancer is spreading despite the chemo he was receiving. They think he will not survive to much longer. But he says he feels better than you would believe right now. Which is good, because maybe that will give James and his dad some time to do fun things together when James is not away working. I'm just afraid two weeks will go by so quickly and he will not want to have to leave his dad when the time comes.

Please keep James and his dad and Josh all in your prayers. I pray that God will decide to touch Tom and heal him of his cancer. I also pray that God will help doctors find a cure for Joshua - and soon. I pray for peace and understanding for James and me. And that God will lead us in each decision we make, so we do the right things.

Saturday, September 20, 2008

Joshua's Birthday and a Car Wreck!

Joshua had two special guests for lunch to celebrate his birthday
- his dad and a Cibolo Police Officer
(who brought along a McDonalds Happy Meal and a Cake)

Josh was a little late getting home from school Friday.
His bus driver explained that they had a little party on the bus
for him (and for her - her birthday was on Thursday).
She even brought me out a slice of cake.

Josh had another cake waiting for him at the Weavers'
(the elderly couple I take care of). It was Angelfood with
lemon pudding filling - yum! I took Josh and Steff over there
when they got home from school to share the cake with the
Weavers. The kids brought their instruments over and played
a little concert for them. It was so sweet. Josh playing
Three Blind Mice for them on the bells and Steffany playing
a bit more complex an arrangement (I'm not sure what the
name of the tune is) for them on her violin.

We also got the lift on the van on Joshua's birthday, Friday.
Josh and I had to go to their office - driving in the old van
with no a/c and it running really rough - so they could put
straps onto Joshua's ventilator cart to make sure the lift
would work with it. Then, we drove the old van back home.
A few minutes later, the guys at the shop drove our newer
van home for us - all fixed up with the lift!
I'll share pictures of it at the end of this post.
(Josh can load and unload his vent all by himself now!!!)

Joshua and I had to be to Steele High School by 10AM
because he wanted to join with his class in setting free
the frog and tadpoles they have been studying in Science.

It was so cute to see the little kids barefooted walking down
to the pond behind the teacher through grass taller than their
heads on a little path the teacher had made for them before we
got there. All the kids were excited to participate. The teacher
took a picture of everybody out there, but I don't have a copy

Then, it was time to set up for Joshua's birthday party at the park!
We used both our vans and my sister's car to haul tables we borrowed
from our church, a van-load of balloons, etc. We were running wild
between our house, the church and the park.

When we got everything set up and the hotdogs on the grill,
my sister and Steffany went to go by the house for the cake
and ice cream and to let Steff change into shorts. Then,
they had to go pick up my sister's boyfriend from class.
They were on their way back to the park - almost there - when
I got a call from my sister's boyfriend - they had been in a car wreck!
It happened not a block from the park - but none of us had seen or
heard anything. My sister pulled out in front of a car they had not
seen - it had been around a curve and coming a bit too fast. It struck
my sister's car in the driver's side back door - where my daughter,
Steffany was sitting. All three of them were shaken up. Steffany
had a bump on the head. She said she had a headache but was okay.
They all refused any medical treatment. And everyone in the other
car was just fine. But there was some question as to whether they
had insurance.

Since the cake and ice cream was with them in the car,
the kids at the party had to wait a while longer than expected to eat it.

But we managed to get all the treats delivered, and everybody had a
great time. His cake was a little shaken off it's foundation - from the
car wreck - but was still delicious!

The kids played baseball for about an hour, devoured
their hotdogs and chips, played baseball a bit longer, sang to Josh,
ate cake and ice cream, watched Josh open a few gifts. Then they
took turns hitting a baseball pinata with a baseball bat.

Then, they headed off to a game of football.
Moms had to come pry their kids away.

When we got home from the party, Josh unloaded his own
ventilator cart out of the van - with our new lift - see:

Thursday, September 18, 2008

Smarter than a 5th Grader, etc.

Smarter than a 5th Grader?



certainly not funnier
than this 5th grader

Ain't he cute?
Joshua spends hours each night working on homework
that would likely take most kids a few minutes. Even still...
he refuses to give up. So, to help him get through it all,
I study over it and try to explain it to him bit by bit.
You know, I am learning things I don't remember
so well from back when I was a 5th grader.

For instance, this week in Science class, the subject
is Photosynthesis. The assignment - to make a brochure
answering all sorts of questions about the process plants
use to turn carbon dioxide, water and nutrients into food
and oxygen. It had to be neat, colorful with hand-drawn
elements. So, together, Joshua and I put together
one awesome brochure. Joshua just put the finishing
touches on it this evening:

Un-Frozen Freezer

We had a little incident with our freezer last night.
For some reason, it decided to quit freezing and
let everything inside thaw out. We had just bought
lots of ice cream in preparation for Joshua's birthday
party this weekend (they had a great special on
Blue Bell Ice Cream at Walgreens). And every bit of it
had turned to soup. So, we had to throw it all out -
along with a large trash bag full of other food.
We were so disappointed. I'm still not sure what caused
it to stop freezing, but whatever it was - seems
to be fixed now. I still think I'll wait until Saturday
morning to drop by and buy more ice cream -
just in case.

Up-LIFT-ing News

Part of our Medicaid budget this year was to be devoted
to the purchase and installation of a special lift in our
van. It is to load and un-load Joshua's heavy ventilator
cart. I especially want HIM to be able to load his equipment
himself when he wants to go some place. After we decide
which is just the right lift for the job - we must get three
companies nearby to provide bids. Oh sure, it sounds easy enough.
But it has taken months of research, visits in person,
on the phone and through emails. I finally just a week
or so ago received the last bid. I got the call from the
company that won the bid yesterday. And, I took the van over
and dropped it off for installation this afternoon. It should be
done and ready for pickup tomorrow - on Joshua's 12th Birthday!

Birthday Surprise!

Speaking of his birthday, Joshua is in for a nice surprise.
I have been speaking to some of the kind folks over at the
Cibolo Police Department today. An officer or two will
help celebrate Joshua's big day by coming to his school
just before lunch - time and bringing him a Happy Meal
and enough cake to feed him and his class! They asked
me what Joshua's favorite McDonalds meal was -
chicken nuggets with bar-b-cue sauce and a sprite to drink,
what kind of cake he would like - just a regular white vanilla
cake maybe decorated with a police type theme, and when and
where they should meet up with him.

For those who may not remember, for Joshua's
10th birthday.. McGruff the Crime Dog along
with several Cibolo Police Officers came to our
house to deliver Joshua a birthday gift....

They announced Joshua was going to become
one of them... and be sworn in at Cibolo City Hall.

He got his own real badge, patch and oath of office.

And they have since taken him out on patrol.

Some of his officer buddies have come to eat
lunch with him at school a few times
over the past couple of years.

The last time was just before Christmas last
year - when they brought their nice, shiny new
Harley Davidson motorcycles up for
him to check out.

Josh has no idea they are coming again this year.
I know he will be so excited to see them!

Wednesday, September 17, 2008

Party Planning

His 12th birthday days away,
and nothing is prepared for Joshua's party -
not even an idea for a theme.
He didn't know what he wanted.
Josh loves sports, games, cartoons,
and so much more.
So after much brain-storming, I finally
decided on a baseball theme.

Next decisions: location and time.
Kids can't play baseball in our backyard
without fear of a stray ball going
through someone's window,
so how about a nearby park?
with an actual baseball diamond?
A phone call later and we are in luck!
One is available at Cibolo's city park
Even better - there is no cost to use it!

Invitations are next...
I found a cute design...
check it out:

Saturday, September 13, 2008

Good afternoon and welcome to this edition of V Wooten World News....

Looking out our kitchen window, the weather looks lovely and warm...

Just days ago, Hurricane Ike was predicted to make landfall near Corpus Christi which would have had it moving through our area. If that had held true, looking out our window today, we would have seen storm clouds, lots of rain and probably some wind damage.

But the storm changed course, and Ike ended up making landfall near Galveston and moving through the Houston area overnight.

Today, we have been worrying about the family members we have in that area as we watched the damage reports. Here are some pictures and videos:

In other news...

My great uncle Horace Day, who had been diagnosed weeks ago
with terminal pancreatic cancer, passed away just after noon today.
The family is making funeral arrangements for him in Andrews.
Horace was 84. Luckily, we got a chance to see Uncle Horace
last weekend when we visited Odessa.

While we are saddened at his loss, we realize he lived
a very full and happy life and are comforted to know
he is now in heaven.

Inside our garage today, James is busy under our old van.

James is busy attempting to get our old van in good working order so he might be able to use it to drive back and forth to Odessa. His work is allowing him to transfer for a couple of weeks to the Odessa office so he can be close to his parents now that doctors feel James' dad will not be able to beat the cancer growing in him. James has gotten the van inspected. Now he is trying to tune it up and fix the air conditioning, etc.

Keep James in your prayers - he is having the hardest time getting the spark plugs to come loose!

Meanwhile, Joshua has been on the run today - around our neighborhood - looking for anyone who would like to buy items from his school fundraiser.

Even if you don't live nearby to have Joshua come knocking at your door.. you can help him out with his fundraiser. He is signed up online to sell items to anyone with internet access - that means you!

Joshua's request


Would you please help me with my school fundraiser.

I want to win a prize and help my school.




Barbara Jordan Intermediate is having a fundraiser.

You can shop online at http://www.%20fundraisersetc.%20com/store/brochures.%20php?sID=jor3933

The group receives profit from the sale and the seller will receive prize credits.

Enter the seller ID below to begin.

Seller: Joshua Wooten

Seller ID: jor3933

Thank you for your support.

If the link above does not work,
please use the following link
and enter the seller ID:

Discovery Documentary - Life or Death : Battling to Breathe