DRUGS!!!....Well, not the fun psychedelic ones from the 70's

Before we begin; these are all for tuberculosis. He will be on them for appx a year. The health department gives them, it is called Direct Obserational Therapy. (Nice name for saying we will watch you take those damn pills :) So anyway, he will have labs drawn every Friday. Yes, for a year. It will be a long year. In another post I may just post a needs list :)

Rifampin: this one turns all of your bodily fluids orange. Orange tears, pee, saliva, ect. You get the point. This one also kills your liver.

Pyrazinamide: this one hurts your liver, but might not kill it. Makes your tummy hurt :(

Isoniazid: this one causes peripheral neuropathy, fancy for tingling fingers and toes. This one also fucks with your vision.

Ethambutol: this one makes you colorblind. Numbness in hands and feet.

Pyridoxine: this is a B vitamin supplement because it gets depleted from all these other drugs.

 I need one of these in my backyard. I love labyrinths!

And there you have it; the tuberculosis specific medications we will be monitoring for the next year. But don't forget the 5 medications he was already on for asthma. Ollie needs a personal nurse.

Tests, Tests, and How About Another Test.

Gastric Secretion Study: the thought behind this is babies swallow what comes from the lungs. So three mornings of obtaining what might be in the stomach. He tolerated that tube remarkably well.
PPD skin test: repeated just for shits and giggles. It was positive, but I still don't find that at all amusing.
Bronchoscopy: he got put to sleep and had a camera placed down into both lungs just to  have look around. Reality TV at its best. The results weren't great and way too technical for me to want to explain, but long story short, it is consistant with tuberculosis.
CT Scan: gotta see just how big those lymph nodes are and just how bad they are closing off his right lung. Once again, all consistant with TB.

I am beginning to see a pattern here.

Sweat test: we are still waiting on this one, but basically it tests for cystic fibrosis. Four lung infections in one year makes for a very uncool picture.
Blood: Lots of tests pending here. Cultures from the stomach and lung. Immune studies, ect, ect.

Six Days Later

I found this quote on the blog of someone recovering from drug resistant tuberculosis. Something I can completely identify with;



Fear is a TB patient daily bread: fear of dying from the disease, fear of long term side effects, fear of spreading the disease around, fear of people's looks and thoughts every time they see you behind your mask or after your quarantine. Simply fear of about anything.
Although it is natural for people to feel uncomfortable around a TB patient, the feeling that invades the sick person is much more unpleasant.

Isolation Sucks!!

A few things happen when you aquire a communicable disease that scares the hell out of everyone in society:

 Everyone wants to know if THEY are at risk, and should THEY get tested.  And then they want to ask you a bunch of stupid ass questions that accomplish much of nothing because most of them can't be answered yet by me anyway. Really, I don't care. I will be honest. My son has tuberculosis, end of story. (but if it makes some of you feel better, it is almost impossible for a baby to transmit the tuberculosis bacteria). I was told by the doctor today that when all is said and done it is most certainly an adult who gave it to him. So maybe YOU are the one that passed it to HIM.

The second amazing thing that happens is;

 You are carefully, and at times, not so carefully reminded that you are no longer the one in charge. Your child has a "communicable disease". The health department takes over. There are laws that govern your ability to freely move around in society like a normal person. And if you break those laws, you will got to jail. It has happened....google it. Someone will come to our house to give him his TB medication. I never handle those drugs and if I were to wake up an obstinent bitch one day and try to refuse then they simply take him away and give him to someone else.

No Outside World For You!!!

 One of Ollie's favorite things to do is to be outside. It has been over a month since he has been able to tolerate being outside. But when it cools down and the air is not so thick I have done my best to let him go out for a little while.

 We spend a lot of time standing on this ledge. He loves to just stand there and look outside. I tried to get the staff to let us put a mask on him and take him to the Butterfly Garden. NO WAY SAYS THEY!! Gosh, you would think he has Tb or something. Assholes.