Posts Tagged ‘hospital’

It’s Like I Can Breathe Again. And I Didn’t Know I Was Holding My Breath.

Monday, November 15th, 2010

His lips are moving, but I can’t hear him.  The second the specialist says Latham is healthy, my head floods with water.  And the waves crashing in my mind make it impossible for me to listen to what the pediatric gastroenterologist is saying. 

So I squint.  And try to read his lips.  But I can’t.

I glance at David and hope he’s hearing, but when I ask him later to repeat what the doctor said, he can’t. 

So we try to put together our puzzle starting with the boarder and working our way in, and yet, we’re missing pieces – big pieces – and we don’t have the box to guide us.

When we get home, I call the Children’s Hospital and leave a message for the doctor.  When he returns it, he says he’s not surprised when I tell him I couldn’t really hear what he was saying.  He says it happens all the time when he delivers both really good and really bad news.  And he couldn’t be more thrilled, he said, to give us the really good kind.  Again.

He says Latham is healthy.  He does not have Cystic Fibrosis.  He does not have Celiac Disease.  He does not have Irritable Bowl Syndrome, food allergies, Leukemia, or any of the other awful diseases or conditions our toddler has been tested for.  What he does have:  Toddler’s Diarrhea, a condition that usually occurs in children between the ages of 6 months and 3 years, and causes loose, watery stools and severe weight loss.   Although Latham does have chronic diarrhea, the doctor went on to say, children with toddler’s diarrhea do have a normal appetite and grow and develop normally.

Latham has suffered on and off with chronic diarrhea and severe weight loss for the past 8 months and we’ve been relentlessly searching for answers to his health problems for just as long.  It has been a long and scary road for our family and we are extreemly relieved to finally have an answer to the problem that’s been plaguing him. 

It’s like I can breathe again.  And I didn’t realize I had been holding my breath.

I also want to thank all of you for sharing in this journey with us.  We appreciate your supportive comments, thoughts, and prayers, more than you could ever know.  Thank you.

It’s Up to Us

Tuesday, April 6th, 2010

“Huh,” was the only sound she made, my doctor, when I told her my diagnosis.  “Toddler’s Diarrhea,” I told Doctor  Holly,  “I think Latham has Toddler’s Diarrhea.”

I had been researching my 23 month old son’s symptoms ever since our doctor said I should have him tested for Cystic Fibrosis.  Latham had been suffering with chronic diarrhea and severe weight loss for 6 weeks and after a series of tests ruled out viruses and parasites, Doctor Holly revealed chronic diarrhea and severe weight loss are also symptoms of  Cystic Fibrosis.

As soon as she said it, I freaked.  But the more I read about the genetic disease, the more I believed my baby did not have it.  So, I started researching what Latham might have.

I typed ‘diarrhea in toddlers’ in the google search engine and Cystic Fibrosis was the first bullet to appear.  The second: Toddler’s Diarrhea.  According to Keep Kids Healthy, Toddler’s Diarrhea usually occurs in children between the ages of 6 months and 3 years and causes loose, watery stools.  Although they have chronic diarrhea, children with Toddler’s Diarrhea have a normal appetite and grow and develop normally, and usually drink juice.

BINGO!

After nap, every day, Latham begs for juice.  Although I only give him about 4 ounces of apple juice a day, mixed with water, I was hopeful Toddler’s Diarrhea was the diagnosis, not Cystic Fibrosis.  I pulled juice from Latham’s diet immediately.  And immediately began to see results.  Less than 24 hours later, Latham’s watery diarrhea began to firm up; 48 hours later, he had nearly normal stools; now, 2 weeks later, not only are his stools solid, he has gained 4 of the 5 pounds he lost during the last 2 months.

When I told Doctor Holly about Toddler’s Diarrhea, we had just tested Latham for Cystic Fibrosis.  She was calling to say our son did not have the deadly disease.

“I haven’t given Latham any apple juice all day,” I said after she revealed Latham did not have Cystic Fibrosis and asked how he was doing, “and I think it’s working already!”

“Oh,” she paused.  “I guess we’ll keep an eye on that,” was her only response.  “Just make an appointment if you think Latham needs to be seen again,” and with that, she hung up.

I have never been so happy and so irritated by someone in my entire life.  Happy that she just told me my son does not have Cystic Fibrosis and irritated that she just went from saying he could have Cystic Fibrosis to saying we’ll just keep an eye on him.  She didn’t say a word about the possibility of him having Toddler’s Diarrhea.

Not.  A.  Word.

Well, I’ve got a word for her.  Three of them, actually:  Latham is healthy!  And we couldn’t be happier.

I’m also happy I didn’t just wait around for Doctor Holly to tell me what was wrong with him.  I can’t imagine how much more weight my son would have lost, how sick he would be, and how many more tests would have been run trying to find out the cause of his severe symptoms.

I listened to my inner instincts.  I discovered what has wrong with him.  I did something about it.  And I am proud of myself.

I’m not saying I’m a doctor.  I’m not saying I can diagnose every problem.  What I am saying:  we know our children better than anyone else, even our doctors.  And it’s up to us to listen to our instincts and fight for our babies, especially when they can’t fight for themselves.

It’s. Not. Right.

Tuesday, March 23rd, 2010

There are too many cars here, I think as David, Latham and I circle the 7 story underground garage until we finally find a place to park.  It’s early, only 9:15am and I shutter to think how many more cars will park in this place.  There are too many cars here, I think again, except this time my thoughts spill from my mind and out of my mouth since David quietly agrees with them.

“It’s not right,” he says.

“It’s not right,” I agree.

We don’t say another word.  We don’t have to.  Those three words say it all.  It’s not right kids get sick.  It’s not right kids hurt.  It’s not right parents have to watch their babies suffer.

It’s. Not. Right.

We find a space to leave our van in the children’s hospital garage, a place I never thought I’d have to park.  We’re here because a couple days ago, our family physician told us to test our 23 month old son, Latham for Cystic Fibrosis, a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas which makes breathing extremely difficult.

She is concerned, she tells me because she can’t find the reason behind Latham’s chronic diarrhea he’s been experiencing the past 6 weeks.  She ruled out viruses and parasites through a series of tests she ran on his stool samples last week and since two of the symptoms of Cystic Fibrosis are extreme weight loss and diarrhea, she says we need to cross the deadly disease off the list of possibilities, too.

I.  Freaked.

What if Latham has Cystic Fibrosis?  What if Latham has Cystic Fibrosis?  What if Latham has Cystic Fibrosis?  The question swirls in my mind like a tornado.  I could barely eat.  I could barely sleep.  I could barely think.

I call the children’s hospital to make an appointment for the test our doctor said Latham needs, a sweat test.  It’s a no needle procedure that measures the amount of chloride in my little boy’s sweat.  The first date they had available the nurse on the phone informs me is April 2nd.  After I tell her in a very honest and teary way there was absolutely no possibility I could wait that long, she said she would squeeze us in Monday, March 22nd. 

4 days.  I would have to wait 4 days.  4 days.

My mind was mush as David, Latham and I stepped in the white lightening elevators 4 days later and ride our way up to the ground floor. 

“Where did we park,” I ask David.  “I didn’t even look.”  When David shrugs, the woman riding with us said, “Purple planes.  You parked on the purple planes level.”

I smile to thank her.  It’s so kind of her to notice.

After arriving in the lobby, we wind our way past the rain forest lunch room and radiology, through the working toy train station and the burn unit, then ride up 2 levels on the elephant elevators and walk across the hall to the main lab.  David catches my eye when we see the sign hanging on the lab door.

sign

It’s.  Not.  Right.

Pam is the nurse who greets us when we walk in the room.  Her son is the quarterback for the University of Northern Iowa, she proudly tells us when David mentions the t-shirt she is wearing.  She smiles while talking non-stop about her family, the weather, and Latham’s curly hair.  She loves his locks, she says.  I’m so grateful for the chatter.  David and I are paralyzed with fear while she’s running the test on Latham and she knows it.

The test itself is painless.  Pam cleans our son’s right arm and places two electrodes on it which sends a tingling current that causes sweating.  When the 5 minute test is finished, she keeps chatting us up while she seamlessly repeats the same procedure on his left arm.  She then collects the two pieces of gauze which holds Latham’s sweat and says lab results would be ready that same evening.  She said she would page the results directly to Latham’s doctor.

I try to go about the rest of my day as usual while I wait for the results.  I feed the boys lunch.  I put them down for naps.  I go to Sonic for my route 44 daily dose of diet vanilla coke.  I soak up the sun and play with my boys outside for a couple hours.  I greet David when he gets home from work.  I feed everyone dinner.  I pick up the phone when it rings.

And I hear her voice, my doctor and I don’t even know what she is saying for the first few sentences.  GET TO THE RESULTS, I scream in my mind while I listen to her spout some random numbers and blather on about whatever else she said that I can’t remember.

This isn’t good, I think to myself.  Why is it taking her so long to tell me whether or not Latham has this deadly disease?

“…which means Latham is negative,” I hear her say all of a sudden.  I focus immediately.

“What does that mean,” I want to clarify.

“It means,” she says, “Latham does NOT have Cystic Fibrosis.”

I all but fall to the floor with relief.  And so does David.  While we still have to discover what is causing Latham’s chronic diarrhea, we at least so know what’s not causing it:  a deadly genetic disease.

But it’s not right other parents don’t get the same good news.  It’s not right their children have to suffer with Cystic Fibrosis.  It’s not right their family has to circle the garage day after day to park in the purple plane lot, ride up the lightening elevator to the lobby, wind their way past the rain forest lunch room and radiology, through the working toy train station and the burn unit, then ride up 2 levels on the elephant elevators to the Cystic Fibrosis unit for treatment.

It’s. Not. Right.

A Test for my Toddler

Monday, March 22nd, 2010

My alarm went off at 7:30 a.m. today,

just like usual.

I took a shower and applied make-up today,

just like usual.

I got the boys up and dressed them today,

just like usual.

I fed them oatmeal and fruit for breakfast today,

just like usual.

I buckled Latham in his safety seat and we went for a drive today,

just like usual.

And then, I arrived at the hospital where my baby was tested for Cystic Fibrosis today,

the most excruciatingly unusual day of my life.

LathamCF