Tuesday, November 17, 2009

Augmentin, Amoxicillin, Albuterol, Pneumatoceles, and other terms I wish I didn't know



Last week, I heard it.

The dreaded chest congestion when Benjamin breathes.

The same kind he had in June/July when he was diagnosed with pneumonia. That led to a swallow study, where it was determined that he aspirates on thin liquids. We have had to thicken all his liquids (which is basically just milk for him) ever since. His milk is the consistency of runny yogurt. The only good that came from that (besides the obvious, that he was no longer drinking his milk down into his lungs) was that it allowed him to transition from a bottle to a sippy cup.

When he had pneumonia in the summer, we could hear the raspiness in his chest for a few weeks before we did anything about it.

Why?

Well, he seemed to feel fine, he was simultaneously cutting some teeth, and I figured it was just related to that. I mean, who gets pneumonia in the middle of the summer?

When I finally called his doctor (have I mentioned that I love her?), she sent us to outpatient to get a chest x-ray. The results? Pneumonia.

I really shouldn't have been surprised. And, of course, I felt like a bad mommy for waiting all that time. Benjamin is such a trooper that it really takes a lot to knock him down. Plus, if some of you old-school readers remember from last October, they found a large pneumatocele in his right lung during his open-heart surgery. It's basically an air-filled cavity that is usually caused by some sort of illness, but B had never been sick before his was discovered. We were told to just keep an eye on it, that it may cause problems later.

I guess it's later.

So last summer, when he was diagnosed with pneumonia, he was put on amoxicillin for ten days, breathing treatments w/albuterol for several days (three times a day basically), and Thick-It (for his milk) indefinitely. The chest congestion cleared up within a matter of days.

There wasn't a fever that I remember, nor any other symptoms that made me think he was sick.

Yet ever since then, when I've had to go to various doctors, and had to answer, "Has anything changed in his medical history," and I've mentioned the pneumonia, the next question is always, "Was he hospitalized?"

No, he barely acted sick.

But this time is a different story.

Still no fever. Nothing that (I pray) will require hospitalization.

But he's just not himself.

He had just gotten over that horrid Hand, Foot, & Mouth Disease that nearly drove us both to the edge.

We had about three days of smiles and belly laughs.

Then...the sound.

It's like when the "check engine" light comes on in your vehicle.

You know there certainly isn't any good that will come of it, and you simply can't ignore it and hope it goes away. (At least not this time, LOL.)

I waited a couple of days just because I hate to run to the doctor with every cough. In fact, I had asked her two weeks earlier about Andrew's cough that he'd had for two weeks. She had told me that if there was no fever and he felt fine, then it was probably nothing. Kids cough this time of year, and it's usually nothing. And it was nothing. He's fine.

But he's Andrew. No pneumatocele. No prior pneumonia. Nothing like that.

Let me stop right here to say that I really, really love our doctor. I have friends in real life and on the Internet who have children with special needs. It seems that the majority of them have to fight to be heard. To have tests run. To not be just shoved aside or told to just "wait and see." It really infuriates me for them, their children, and the system in general. And it makes me that much more grateful for our proactive, yet-not-panicky doctor. I am very much an advocate for my child, but you know what? So is she. And that is how it should be. I'm just glad that she's young and hopefully won't retire before my children stop needing a pediatrician.

Anyway, so I called her last week, about three days after I heard the chest congestion. Actually, I take that back. I originally called her the next day, and she told me just to keep an ear out for it and look for a fever, etc., and call her back if it got worse. So I did. And while it didn't get any worse, and there was no fever, it didn't get any better. So two days later, I called again and we set up an appointment for the next day. An x-ray next door at the hospital's outpatient services and then an appt for her to read the x-ray. Actually, we had an appt w/the nurse practioner b/c she was booked, but were assured she would come look at the film and listen to his chest.

And she did.

The x-ray showed some haziness in his upper right-hand lung, where it had been before. Not a full-blown round pneumonia, but something of concern. So this time we did augmentin for ten days, and breathing treatments for over the weekend or as needed.

Well the weekend came and went. And not only did Benjamin not get better, he, in fact, got worse. Still no fever, but just a basic lousiness that you can tell he is simply not himself. And the congestion and coughing got worse.

Then Sunday he started to seem to feel better, but all the other symptoms kept getting worse.

I kept waiting for the medicine to kick in.

For the raspiness when he breathes to stop.

But it hasn't happened.

He's been on the augmentin and breathing treatments for five days.

And he's gotten worse.

So back we go tomorrow morning to outpatient and the doctor's office.

I tell ya, it about broke me today.

I haven't felt well today as it is. Took Andrew to preschool this morning and then while I moved Benjamin around from one (safe) play place to another throughout the house, I pretty much slept all morning. A thirty-minute nap followed by an hour-long nap. Then I had to eat lunch, feed Benjamin, and pick up Andrew. (All of this in really rainy, dreary weather, naturally.) Then once we were back home and the boys were both napping, I took another almost-two-hour nap.

And while I didn't feel good today, I don't really think I'm sick.

Not sick sick anyway.

Just emotionally, mentally, and physically exhausted.

I'm tired of being on a first-name basis with half the medical staff in Chattanooga. (Though I love them all!)

I'm tired of all these medicines.

I'm tired of having to arrange a babysitter for Andrew when I have to take B to the doctor. (Though eternally grateful for the friends and family who are so wonderful to us!)

I'm. Just. Tired.

Tomorrow is a new day, and I know that it will all be okay.

But for now, you guessed it.

I'm tired.

13 comments:

Anonymous said...

Hugs and prayers !!!

Jamie

cremcd said...

{{Hugs}} I hope everyone feels better soon! ~Courtney

Branton Family said...

Praying for a good night sleep for all of you...hang in there.

Anonymous said...

Seeing B not be himself has to be draining. You have told us how strong he is and how it takes so much to get him down, so to see him not be the belly laugher must be tiring for your soul. And the body follows the soul's lead.
I hope tomorrow's appt brings you a ray of hope and sunshine!
Love,
JILL

Fredericks Family said...

Saying a prayer for strength and a little extra comfort for you tonight.. You have a lot on your plate and I tell you, with my 2nd pregnancy I was so much more tired than my 1st so I can't imagine #3!! Hugs!

prayforbrayden said...

I know how you feel! We have been sick for going on 1 month now. Between Brayden and the other 2 kids, I practically live at the pediatricians office. We have been battling recurring strep and sinus infections. I have been feeling really bad this week and finally went to the Dr. Only to find out I have pneumonia. Luckily Braydens lungs sounded clear, his is just all upper respiratoty. We do vest therapy when we do Braydens breathing treatments. It helps to shake up the thick secretions that settle in the lungs. Luckily, Brayden has only had pneumonia one time since his trach was removed. Hope you get some rest and Benjamin gets to feeling better soon.
Shannon Jacobs

Leah said...

I'm so sorry! It is just plain tough to deal with the crap when you're exhausted, and it doesn't matter if that is "physically" or "mentally". Exhaustion is exhaustion!!! I hate those nights when, in the middle of the night, I get up to visit the bathroom or something, and from behind Angela's door I hear THAT COUGH! It's the cough that says whatever plans I have tomorrow need to be cancelled. That first thing in the morning I need to call the doctor's office. That the rest of the night is going to be long, as I won't sleep soundly, constantly listening for the cough to change, telling me it's time to get her into the car and head for the ER. I do have to say, I love our pediatrician. Angela (and all the other medically fragile kids in the clinic) have their charts flagged. So, if I call, she gets in right away, and they allow for extra time. If it's a day our doctor doesn't work I have her home number, because sometimes it's just more of a pain to explain the long medical history to someone who doesn't new! There have been a couple times when I've called in for a sinus infection, and get a call back from whoever is on saying, "Dr. Mary says if you say Angela has a sinus infection, then she does so I can call in a script for you. Just make sure to come in next week for a follow up."

count it all joy said...

Oh Angela...this sucks. I've been where you are right now at various times in the last couple of years and I can absolutely relate. Will be praying for you and your lovely ones and hope that you will feel held by your Father who loves you so much. Meredy xo.

Shannon said...

i am sending you lots of love, hugs and prayers. take care!!!

Christia said...

Definitely thinking about you and Benjamin. Hugs.

Kellye said...

Honestly, and I think I can speak for so many of us, I don't know how you do it or how you've gone this long without posting something like this to say "I've had it up to *here*". But you march on and give the rest of us hope Angela and for that I am enternally grateful to you because I often think when I have really bad days that we don't have half the battles to fight that you guys do and you do it all with such grace. I hope that today is indeed a new day and you know that I'm thinking and always praying for you all. BIG HUGS!!!

Tricia said...

Oh, Angela. I am so sorry you had this kind of week. I have read the other updates and I know things are looking up, but I also remember these feelings that you are describing. They come and go, because you are in this for the long haul with your little one. Know that I pray for you every day, even if I can't get to my computer to leave you an encouraging message. May God continually bless you and yours.

Mary Jo said...

OK so I we chatted about B's latest illness on fb and email... but I just saw this picture of him now. So sad! Breaks a mamma's heart... any mamma. I'm glad he's feeling better and I hope he stays that way!