Sweet (Healthy) Baby Ollie

Medicine Day Sucks!

    We should be used to it right? On top of the fact that I shouldn't be complaining, it's only two days a week now. But it is a struggle to get a 20 month old to take down four crushed up, powdered down pills. In cinnamon applesauce no less, YUCK! Let's not forget the fact that I am not a morning person; I have absolutely NO NEED for personal interaction at 9 am. So don't sit here and try to chit chat with me as I wrestle down my toddler so you can shove nasty applesauce in him while trying to convince him "there's only a few more bites" every 5 seconds.

But the fun really takes place the rest of the day. He doesn't want to eat on medicine days and he cries most of the day. So somehow the shit makes him hurt somewhere, but he can't tell you what it is that's bothering him.

So we just go with it and I guess remember to be thankful that we don't have to do it again until Tuesday morning. 

Let's Have a Pow Wow

Too many chiefs and not enough Indians.....that's how the typical saying goes. But when it comes to this TB shit; There are plenty of Indians and not a single damn chief.

We have an infectious disease doctor through the health department that is mysteriously hidden behind nurses and protocols set forth by the CDC. Easy enough, right? Not when it's your child. I guess he's like Bosley and the nurses are Charlies Angels. (that is said purely sarcastically). Then we have our pediatrician. Yep, he's the be all end all of doctors in my current book, but he didn't order the damn drugs and is not the "attending" tuberculosis physician. So who is? The pulmonologist from Chapel Hill? The Infectious Disease doctor from Chapel Hill? And we have already seen a fine example of "I am in charge here but if you have a problem see another doctor". Case in point, the labs that the pulmonologist ordered because literature states that these TB drugs "can be highly toxic to the liver". I didn't make that shit up. But the health dept. doctor says "too bad, that's not our protocol and we ain't doin em"

So what does this crazy Mom do? Politely requests a copy of said protocol. And make that pediatric specific please.

My current complaint; Ollie's low grade fever is back. He has not had one since about day 3 of medication. One of my BIGGEST obstacles to getting anyone to believe me that he was still sick over the past few months was his lack of raging fever. Everyone expects small children to have fevers of 104. Not Ollie. Never did. So now that we are back in low grade fever territory, I take it seriously. Well la-ti-da.....who ya gonna call? Well not the nurse that gives the drugs...."not my problem, go see your pediatrician" Ok, i did make that shit up. What she really said was it's not a side effect of any of the medication. Maybe I am dyslexic but I know I read "immediately report any adverse side effects such as UNEXPLAINED FEVER". I didn't make that shit up either!

Can you see where I am going here? For a fleeting moment I felt bad for talking so much junk about the health department.

NO FEAR! That fleeting feeling has left the building!

Ahhhh.....The Health Department

So I may not have the highest opinion about the health department, but there is some good news; anything they require or refer is paid for by the health department. The chest xrays they will require in October; covered. The monthly eye exams; sorta covered (this one is tricky, but at least THEY will argue with my insurance, not me) The PPD's they require us all to retake in 6 more weeks; covered. Now I am just trying to convince the nurse that some labs need to be required. (she said she will ask the doctor today).
Tomorrow is his last day of daily medicine. After tomorrow he goes on a Tues and Fri schedule. The search is still active to figure out where Ollie could have gotten TB. Clearly the parameters they have set for most people do not apply in his case. I am told going beyond the 6 month search may actually exceed the law, but the nurse has asked the state health department for clarification. It amuses me that people still don't get that they are looking for his exposure, not who he may have infected. But whatever.

Wednesday we go back to Chapel Hill to see the Infectious Disease doctor. You know you're in serious business when you have your own infectious disease physician.

But I will take a moment and just reaffirm that his pediatrician remains the one doctor that stands above the rest, because without him we could still be trying to figure out why Ollie just didn't seem as well as he should.

I Can See Clearly Now

We went today to pick up Ollie's new glasses. A bit challenging at times. As long as they don't move and he stays distracted, he keeps them on. But the minute that he is reminded they are on his face, he takes them off. He was obviously seeing things different when he first got them because he wouldn't move his head. He just sat there not sure how to react.

 Maybe it's not so bad right here.

Mouthful of poptart!!

There Is a Tunnel Somewhere With A Light at the End

We went today for the first of our monthly eye doctor exams. How about Ollie has "severe astigmatism". We are going back in the morning for further testing. The doctor said the drops she has to put in his eyes will make his pupils dilated for a week......a week? He needs baby sunglasses.



Monday Afternoon in the Twilight Zone

There is a certain level of "I have lost some of my marbles" that has become comfortable. I don't remember much of anything, it's like I developed severe ADD within a few days. I can remember that you spoke to me, I can even picture what you looked like when you said it, but I have no idea WHAT you said. And really, odds are, I probably don't care. I have grown accustomed to having lost a certain portion of my mind, in fact I think it is quite fun. I think it will be ok, and I think I will get it back. But maybe right now it is best gone. I often just want to punch somebody and maybe the part of my brain that is gone is the part that allows me to act on that desire......So losing your marbles may be a good thing.

Tomorrow is the first of our monthly eye exams. An eye exam on a 19 month old should be a true joy. Luckily my kids have an excellent eye doctor and I have faith in her ability. I also got an appointment letter for the Infectious Disease doctor in the mail a few days ago, for next week. Then I need to talk to his pediatrician about these labs that the pulmonologist wanted, but that the health dept said they won't do, because it's not in their "protocol". The nurse said if his eyes turn yellow or he starts to look jaundiced then they will do labs.....well we can all agree it will be a little late by then.

I have on multiple calenders that I am supposed to work the night before his ID appt. It has been stressing me out. HOWEVER, I can not find any evidence that I am supposed to be at work that night on the actual work schedule. Yet another example of Sylvia losing her mind. Ironically, I keep having dreams that I have lost my shoes.  No kidding.

Friday......Maybe I have Anger Issues

So the health dept nurse says to me this morning "I don't think he has TB." Then if he doesn't have TB how about you treat him for what he does have!!! Oh wait.....cause you aren't a doctor. And he has at least four of those that DO THINK he has TB. All of whom are at Chapel Hill, and I hate to break it down, but I trust them a hell of A LOT more than I trust the flippin health dept nurse. End of discussion.
But just to harp on the subject for just a few more seconds; I have had to correct her on a few differences between what those FOUR CHAPEL HILL DOCTORS (four; as in 3 pulmonologists and  one Infectious Disease, and the Radiologists that read his reports and said "consistent with tuberculosis") have said versus what she THINKS SHE KNOWS. Ok, I am done now. Did I say how much I f**king hate a know it all?

Just give my baby his orange pee producing drugs and go.
Maybe I just need a glass of wine with my oatmeal.

The Village

Knowing that so many people are thinking about us and expecially Ollie is amazingly overwhelming. The visits, the warm and wonderful messages mean the world to me.

I was moved once again beyond words this evening. First I went to dinner at Taste of Thai with my beautiful friend Brandy. Then she sent me home with wonderful and much appreciated gifts from The Village in Greensboro, a group of folks that are full of love and kindness, that are so much fun to be around and that I don't get to see nearly enough of (hint, hint :)

Thank you so much!!! Kathy, Brandy, Christina, Anne, Gina, Lucy, Jonah,  & Scott.

We now have days worth of food and entertainment. 

Ollie loves toys that he can push and pull around. I was chasing him around in order to get a picture.

Thank you Sweet Lucy

Zephyr wanted to start eating it now. I think he heard the word "pie" and blocked out the word "chicken".

Thank you Jonah

Beautiful

This was Ollie saying "thank you for the card Jonah"

Let's Pretend We Don't Have TB

We went to the park because it was finally a managable temperature outside. You would never even know that Ollie was sick. Until he started coughing like crazy and actually walked back to the car. I think being isolated in the hospital allowed his poor lungs to rest, but now he is out in the everyday environment and now they are over-reacting again. Hopefully in a few weeks that will stop. And maybe he will get a break before asthma/ allergy season starts!!

This baby is attached to his Big Brother!

Looks pretty good for being so "scary"

Where my brother goes, I will follow

It's My Blog and I Will Say Whatever the Hell I Want.....

BUT.....

I can't help but wonder why certain information that may be important to my child's current "condition" would come from a 10 year old child. Information that actually may be useful for the care and treatment of Ollie. Not to mention the scattered and misunderstood translation via a 10 year old. Whatever......the health dept nurse says to me this morning "I can confirm that what your son told you is accurate."

And that just pisses me off.

So on to more important crap.....Ollie seems to be tolerating the medicines Ok. He gets cranky and very clingy about an hour after so I think it must make his belly hurt. There is one they can't give until he has an eye exam, and then he will need to have an eye exam monthly for the duration of treatment.  My health insurance is just going to LOVE us!

Another side effect is decreased appetite, which I can see is going to be a problem already. As a result he will be getting weighed weekly by whomever is bringing his medications.

And then there is the one that turns everything orange. His pee is orange, inside his mouth is orange, and apparently soon his tears will also be orange.

Pardon my twisted sense of humor, but that will be one that should turn a few heads in public.







Time To See the Fireflies

Fireflies~ you know those little bugs that light up the sky at night. Tiny periodic flickers of light that make you feel young and happy as you sit patiently waiting for the next one to light up. The ones that make children run all over the yard hoping to see where the next one will appear.
I have spent so much time complaining that I think it is time to see the fireflies.

* It could be much worse. Ollie is only "kinda" sick. Very clingy and fussy but overall not the picture of terrible health.
*Tuberculosis is treatable. There are a crapload of drugs with some nasty side effects, but at least in the end you no longer have to wear a mask and worry about losing your friends.
*The rest of our household is negative. First that means it wasn't any of us that gave it to him. Second that means he didn't give it to any of us. But let me once again point out that it is almost impossible for a child to transmit tuberculosis.
*The state of NC provides the drugs for free. That's a load off since these drugs equal appx $30....a day.
*We have lots of people who contact us everyday to tell us that we are in their thoughts. That means a lot to me.
*After months of being sick hopefully Ollie will start to feel better and be able to see what a normal, healthy toddler should feel like.
*Hopefully Ollie will be healthy and ready to go camping in the fall.
*And last but most certainly not least: prescription drugs for Mom!! Because seeing the bright side is not always easy.  

Hold the Door!!

Home isolation for 8 weeks. EIGHT WEEKS!!! Seriously??? No movies, no museums, no Target, no GROCERY STORE. (but the rest of the family can go about their regular activities) Am I supposed to leave Ollie home alone? (obviously not, so don't answer that) Can I wake up now?

So somehow I have to figure out how to finish school shopping with the other kids, get them thier physicals for school, get Chayce to his appointments. And keep ALL OF US from losing what is left of our minds. And I can feel the rest of mine going as we speak just thinking about it.

ANY IDEAS?

*well, let me revise and say that Ollie can be outside until the cows come home. So if the weather would just cool down, we could live at the park? Playdates outside?? And we will be free to go camping in October! That's a plus.

The First Day of The Next Year of Our Lives

This morning started with a visit to our pediatrician. Who somehow makes it all seem ok and even manages to make me laugh at least once, which was a lot since I cried all the way there. He did tell me this morning that the pulmonologist said he probably would not have done a PPD on Ollie because he was nowhere near high risk. So at the end of the day Dr. G. Kirk Walker essentially saved my child's life. Plus it was wonderful to visit the office and have him and his nurse come in NOT wearing a mask. Maybe Ollie isn't so scary afterall.

Then we met with the Health Dept nurse. She did wear a mask and asked A LOT of questions. We get to see her every morning at 9:30am for the next three weeks. Then we get to meet with a CNA every morning at 9:30am for the following three weeks.

But the "good" news is after that it is only twice a week........for the following nine months. The bad news is  he still has to have labs drawn every friday. That means a visit to the health dept every friday. And the whole family has to have repeat PPD tests in two months.

Just talking about is already making me exhausted.

Freedom.....Sorta.

Going home finally!!

 Ollie probably didn't know what to think of the great outdoors. Except of course it was hot as hell. He has about three words and "hot" is one of them!

Ollie missed his brothers. He wanted to be held by Avery all afternoon.

Unloading the contents of Mom's purse. How can I possibly deny him any small pleasure after the week he has had?

Random Hospital Pictures

 Yay, napping on Dad is the best.

 So oblivious to what the week ahead would bring :(

 My beautiful Little Angel

 Ollie loves to wave at people, cars, animals, ect. He just loves to wave. Turned the camera on him and he watched himself wave and wave very happily!

 Maybe this bed is a comfy place to be. Should feel rather secure with the really tall bars and all.

 I am cute. I am just so doggone goshdarn flippin cute

 I want to ride in this car and therefore Dad just has to follow me around with that IV pump, because it isn't my problem to worry about.

 If I could get the motor on here to go a little faster I might make it out of here.

 Tired of these damn masks and I will just eat it, and then maybe you will leave me alone!

My head won't fit through!!!!Or I would be carrying out my escape plan right now.

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.

Those Rare Gems in Life

The temperature in this room has bipolar disorder. Hot, cold, hot, cold. Maybe it is me and the xanax that has gotten me through the week. (hey, judge if you want. My name is on the bottle :)

Everyone is afraid to come into our room. We have had two nurses that come in and actually don't act they want to run out the door. Cherie~ she has two children that  have had open heart surgery. She was also our nurse when I had a very verbal altercation with a rather bitchy pulmonologist. She has been super nice and deserves one of those GEM type thingys. The other nurse was Brandy~ she was super nice, but she was also super pregnant and I worried everytime she came in wearing that oxygen reducing N95 mask.

We have had a few visitors. There are no words that can begin to express the infinite gratitude I feel towards those people. Bobbie and her daughter Sara brought Ollie toys to play with and let me run out and get some breakfast. This after she worked all night. The next day my Mom came and hung out with us for awhile all the way from Elizabeth City! Right after she left, in walked Kyle and Kathy. OMG~ how unexpected that was! They even said they refused to call me for directions that way it would be a surprise! I love those guys!

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.

Walking The Halls

My Dad laughs at me and says I take pictures of everything. So in the middle of the night when sleep just won't come, what else is there to do? It was a very pretty hospital. 

 Hallway to Cancer Center

 Chess anyone?

 The ceiling in the Women's section

 The Children's Chapel

The Butterfly Garden

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.

Losing All the Control

The pulmonologist just became my best friend or my dreaded enemy. Go figure. We talked, we didn't freak out. We waited over four hours for a bed that was reserved the day before. I became one of "those parents". I even threatened to let my child walk around in the halls! There comes a moment when you realize you no longer have any of the control. And I was not quite there yet.

Things never go as planned.....

Imagine my shock when Ollie's PPD was looking a bit reactive. How about the next day when it was twice as big. Well OH SHIT, we have a problem. The pediatrician seemed a little unexpecting of that as well. Oh hell, now what? You wait, that's what. One doctor has to talk to another doctor and the other doctor has to decide they want to help you, ect, ect, ect. This was on Monday, we were scheduled to see the pediatric pulmonologist on Wednesday. I had two days to come to the current understanding of what fear was really about. My son might have tuberculosis.....but let's be totally honest; what red blooded white, American middle class baby gets tuberculosis?And where in the hell could it have come from?? Fear; do any of the other boys have it? Fear; does Ollie REALLY have TB? Two days to grind my head into a stone and WAIT.

How I got here.....

Months of being sick. Well he just has bad asthma. Well now he has pneumonia. Well that antibiotic didn't work, here's another. Well he looks ok, so he will continue to improve. Well he doesn't look sick, so he's fine. Of course we won't do that test. Why are you bringing him to the doctor all the time for a cough. There is nothing else we can do for him.

Yeah, yeah, most people know my struggle, they have been listening to me bitch about it for months. Nothing new and different here.

So I have this friend named Kellie, who has a friend who is a pediatrician,  I thought here is a string to pull and I am pulling it! So I asked to get him to just listen to our story and not push me off like our 2 ED visits and multiple office visits. He was reassuring that we would figure this out. All the chips were in his basket, but I had zero faith we would be taken any more seriously.

What happened next was amusing. And I thought maybe sometimes doctors just like to throw out curve balls to entertain themselves. So............he gave Ollie a PPD test; which checks for mycobacterium antibodies in the blood. That means tuberculosis.