Friday, January 29, 2010

Sickness, Sickness GO AWAY!

In October/November, Benjamin was sick for five weeks. Five weeks. He had Hand, Foot, Mouth, pnuemonia, Fifth's Disease, and who knows what else. The worst part wasn't the sleepless nights. Or the constant trips to the doctor, having to shift Andrew around in the process. Or all the medicines or breathing treatments.

No. The worst part was that I missed my Benjamin. He just wasn't himself.

Then, after so many weeks, I just broke down. On Thanksgiving of all days. It just hit me how hard it was to have a child with special needs. How this was now our reality. How I feel like I am always waiting for the other shoe to drop.

Then December came and he was well. We had a wonderful Christmas. Toward the end of December, Benjamin, who is normally a great eater/milk drinker, started fussing during meals. Then the fussing turned into screaming. Then the screaming turned into food refusal. (Who is he, Andrew?)

This, naturally, for my poor parents, escalated when Matthew, Andrew, and I were at Disney. And while I have always loved my cell phone, I especially loved it when I was at Disney, because not only was I able to talk to my mom, I was able to consult w/B's pediatrician about what to do.

The temporary solution was to offer him his food before his milk, as the milk consumption might be exacerbating another issue. (We'd already upped his Prevacid dose twice since November.) So that worked...kind of. Then she thought maybe he had another intestinal obstruction, like the one that was repaired last January.

Before we even got home from Disney, however, he, along with my mother, caught a bad cold. Once we were home from our magical vacation, it was time for me to snap back into Mommy-of-a-Needy-Child Mode and do all I could to help my poor child.

He went two weeks ago for another upper GI to check for obstructions. There were none. His intestines look great: no obstructions, no malrotations, no twisting. Just some reflux. So we are on the schedule to see a gastroenterologist (sp?) in March (they book way out).

In the meantime, the screaming has gotten better, though the cold has persisted. Andrew got a sore throat shortly after Disney, as did Matthew. Then I got it. And mine came w/a nasty cough and a runny nose. My cough was so bad I had to get a (heavenly) prescription cough medicine so I could sleep. Looooove it.

Then Benjamin's cold added a cough.

Wednesday was his monthly synagis shot. He had a cough but the doctor told me to bring him anyway. She listened to him, checked his oxygen, and said that it kind of sounded croupy but not definitively. His lungs sounded clear to her. She said if I wanted, I could wait it out a few more days.
Then yesterday I could hear fluid when he breathed.

My heart just sinks when this happens.

I know that children with Down syndrome are more prone to upper respiratory infections. They have excess mucous and small passageways. But knowing it and living it are two different things.

I called the doctor at 1:05 yesterday. By 1:45 I was on my way downtown to Children's for a chest x-ray while my mom was on her way to pick up Andrew from preschool. (Matthew was in a meeting and couldn't even be reached until I was at Children's...thank goodness for my mom!)

This picture was taken while we waited for his chest x-ray. Poor little bub.

I couldn't go in the room w/him b/c of Thomas, but thankfully he didn't really notice. They're always so good down there; he was just fine.

Then we drove to the doctor's office for her to read the film.

There is a slight haze in his lower, right lung. Not a full-blown, round pneumonia, but the start of something.

And lo and behold, he has an ear infection. His first ever. Andrew's never had one. And it's actually surprising that B has never had one, considering he's more prone to them.

So we're doing Albuterol in the nebulizer (breathing treatments) for his lungs and Amoxicillin for his ear. There's not much you can do for the cough besides a humidfier and Vicks on his feet w/socks.

And already this morning, he is more like himself. Even after only one dose of the antibiotics. He actually giggled with me at breakfast. I swear he's "gone" for so long that when he "comes back," I don't realize how much I've missed him. I get so accustomed to just being in Mommy-Take-Care-of-Everything Mode that I forget that sweet giggle when it's gone. 

People with typical children who haven't necessarily been through all of this sometimes say, "Oh, I don't
know how you do it."

But we moms who "do it" know. We do it because it is what you do.

I worry about leukemia. In the back of my mind, I think, "I can deal with the Down syndrome and pneumonia, but I could NOT deal with leukemia."

But then I know.

Yes, I could.

Whatever it is in life that God deals me, I can deal with it. Because I am not in this alone. I have a wonderful, nurturing, supportive family. I have terrific friends, many of whom I've never even laid eyes on. And I have an all-powerful God. He calls the shots. And all of it is for a reason. (Not that I want B to get leukemia, God, in case You were

I need to stop now because I have normal things to do. Laundry, shower, feed my boys. Things like that make me smile (though I get sick of doing them, yes, even showering) because they are routine and predictable.

But I do want to blog more about some things, namely the preparation for Thomas and how my mind is having a hard time expecting a "normal" child.

Thanks for reading. :)


Sarah said...

Crystal and I were discussing cancer a little this morning and our fears about that sort of thing...the millions of how could I deals. But you have it on the nose...what seems impossible to handle when it comes to our kids isn't in reality b/c you do what it takes....that's your kid and even if it doesn't look do what it takes.

I hear you.

Fredericks Family said...

I pray for you guys everyday. I pray for healing, wisdom and most of all strength! I am so glad the meds kicked in quick and I hope they continue to bring your happy little guy back:) He got a hair cut!

Diana said...

I have never known two greater fighters than you and Benjamin, stack the odds against you and you still come out with smiles and laughs. I love you both dearly!! To have *normal* child Ellie has been the sickest kid!! We have had our rounds with RSV, the flu, the mouth sores, multiple ear infections, and countless colds. It would be easier to count the well days than the sick!! I agree it is so nice when they are well and smiling and happy, it makes those weeks of illness easier to swallow. Please don't mention the C-word (cancer). The mere thought of it breaks my heart into a million pieces. I am hoping after baby John makes his appearance to start training for my first half marathon. I would like to run it for Emily's Power for a Cure, which is a local organization that raises money for children's cancer in Chattanooga. All the money is used at our local hospital for research and better detection equipment. Who knows maybe we can get together and take the Couch to a 5K all the way to a 13.1.

JILL said...

I'm so glad you savor those moments when he "comes back"! And I send you all my hopes for him staying healthy for the rest of this winter!
Be warned... Carl (and another adult friend) who just finished amox developed a bad rash 8 days (yup, Carl & my friend were exactly 8 days) after beginning the amox. Wikipedia's page of "amoxicillin rash" shows exactly what it looked like. Looked a lot like 5ths without the slapped cheek look. Hospital nurse said it was non-allergic rx and harmelss, but could last 6 days. Just in case you see it, too.

Todd and Courtney said...

oooo I want to do a 13.1! I did the Nike Women's one in San Fran BEFORE Lauren, ha! Angela, I love reading your posts. You are so sweet and I wish I could see you more. You are so helpful to me, answering questions about mommy stuff (like preschools and library time). You are so strong and your boys have the best mom. And how could I not mention that your boys are sooooooo cute!

Steven Hrpopolis said...

Thanks for making me cry (Well, Garth Brook's The Dance was also playing on my computer, so not sure which one did it, but anyway...).

Kellye said...

Thank the good Lord for antibiotics. I mean seriously! Thank the good Lord. I'm so glad you guys caught the pneumonia early and he's on the mend! Hopefully you will FINALLY catch a break, no matter how small!!!

Shannon said...

yay for giggles!!!! the picture of benjamin is just so sad!!! he looks like a little guy who isn't feeling well. i hope the meds do the trick and you are ALL feeling better soon.

it's funny, carter never has had an ear infection but both mason and hadley needed tubes. i always tell craig that carter got my ears! LOL

please take care, and know that we are all thinking of you!! and i can't wait to hear all about your final weeks of pregnancy before thomas arrives.

big hugs!!!

Tricia said...

Even though I have been absent from commenting and reading lately, I have prayed for your family daily. I will keep it up, more specifically now that I am caught up reading.

Lindsey said...

Thanks for sharing, Angela. Keep leaning on the Lord, and we'll be praying for B to get better super fast!

Jill said...

Angela, yesterday my boss and I were taling about the increase in medical insurance and copays that hit us at the beginning of the year and the conversation turned to Kenzie and her sensory issues and low muscle tones. She told me that she was really surprised by how well I handle everything. She said there a lot of mom's that deal with a lot less than me and complain, whine, moan, and groan about it. I told her that I have a friend whose son has Down's Syndrome and I just saw the movie Extrodinary Measures and the two kids on there had Pompe Syndrom so that puts it in prespective plus the fact that I am Kenzie's mom, I just do what it takes for her.

Cheri T said...

Thank you for this post, Angela. My little boy,Nathaniel, had pneumonia last August,with an ear infection. The antibiotics didn't kick it,so I took him to a naturopath who put him on a homeopathic remedy that brought him "back to himself"in three days.He had one good day,then got roseola.Then pink-eye.Then a bad cold.He was sick with one thing after another for almost 8 weeks!He missed two months of PT.It was all so discouraging and overwhelming.None of it was really major,no hospitalizations or anything like that,but I often feel like I'm just waiting for "the other shoe to drop". Thank you for reminding me that what I really need to be doing is trusting God, and resting in His wisdom.