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.