Respiratory Infection and Controversial Drug

NOT WHAT HE WANTED TO GET FOR HIS BIRTHDAY

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:

WHAT ARE WOBBLERS?

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.

Houston on Hold, Josh sick and James away

UPDATE....UPDATE...UPDATE...

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.

Joshua's Birthday and a Car Wreck!

FRIDAY - BIRTHDAY DAY!!!
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!!!)

SATURDAY - PARTY DAY!!
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
yet.


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: