Thursday, May 05, 2011

Why Sam Doesn't Sleep

(This post is a bit long, so feel free to scroll down to “The Bottom Line” at the end of this post.)

Eight years ago I sat in a doctor’s office and was told, “When you hear hoof beats, it makes the most sense to assume its a horse, not a zebra. Only when you’ve ruled out the horses do you start the search for zebras.” He used this analogy to explain the importance of looking for the mundane diagnosis before the unusual diagnosis. Eight years later and this story is still fresh in my mind.

Last December Sam started having difficulty sleeping. From 4 months until 3-years-old Sam had been an excellent sleeper. 7 pm until 7 am with a long afternoon nap. The day he turned three it all began to change.

When Sam resisted bedtime, sometimes for up to two hours, we saw a “horse.” Surely this was normal considering all the changes in his life: new state, new house, new toddler bed, new sister, dropping the afternoon nap. Surely it was  a horse. And then Sam started waking up in the middle of the night. Multiple times during the night. Still we saw the horse.

Somewhere along the way our great little sleeper transformed into a kid who fell asleep at 9 pm and then woke up at: 10:30 pm, 12:15 am, 2-3:45 am, 5:15 am, and then got up for the day at 6:30 am. We followed a similar pattern every night. For weeks. And then months. And nothing worked. Some nights Sam would cry and scream for two hours at a time saying things like, “I want to go to sleep! I can’t stop whining.”

Trying to catch this evasive horse we went on a mission for a cure. We spoke with friends, sent out Facebook questions; I read every single parenting book I could get my hands on. We spoke with three different counselors. We spoke with doctors who gave us very kind smiles and said he would grow out of it.

With rare exception, March and April were a blur. I’m honestly not quite sure what I did during those two months. John would walk around bleary-eyed while friends jostled him, “That new baby keeping you up, huh?” Nope. The toddler.

In addition to the lack of sleep I underwent a crisis of confidence in parenting. I oscillated between thinking, “I’m just too lenient. I need to buckle down and ‘super nanny’ this kid.” Then the next night I would think, “Poor guy’s world has been shaken up so much lately. Maybe he just needs more one-on-one time with me.”

I made an appointment for Sam to see a new pediatrician. I was at a breaking point. This new doctor looked at the sleep journal I kept, saw my delirious son pendulum from jumping and flailing around the room to collapsing on the floor sobbing that he was tired. “You must be exhausted,” she said to me, prompting me to break down in tears.

She decided to refer us to Riley Children’s Hospital in Indianapolis. The conversation I had with the appointment scheduler felt like a gift from God:

Her: “Well, our next available is June 9.”
Me: “Okay.” (Fighting tears thinking I cannot go another month without sleep)
Her: “Wait! That one just got nabbed. These appointments go really quick. Now we’re looking at the middle of June.”
Me: (Now the tears are really flowing as I think about the two youth camps I’m preaching at this June.) Ma’am, would you mind checking one more time to see if there’s anything earlier?”
Her: “Okay, but there won’t—wait! Someone just canceled. How about in two days?”
Me: “Yes! Please! Can we please have that appointment?”
Her: “You’ll need to get a referral from your doctor first and I can’t guarantee this appointment will still be available.”
Me: “Ma’am, I’m desperate. I don’t care if I have to pay out of pocket. Would you be willing to please, please write our name down and I’ll fax a referral to you later?”

I don’t think I’ve ever begged as much as I did during this conversation. This wonderful woman took pity on me and yesterday Sam and I spent five hours at Riley meeting with wonderful doctors and undergoing numerous tests.


We learned in these five hours that Sam has a pretty nasty case of asthma. Furthermore, his adenoids are massive and are most likely causing sleep apnea. The reason why Sam cannot sleep at night is because Sam cannot breath at night.

As soon as we heard this diagnosis, mystery after mystery concerning Sam’s health began to make sense (like all of Sam’s bouts with croup, and the time we rushed him to the ER because of the hundred purple spots on his chest only to be told, “Well, that’s normally a sign he’s not getting enough oxygen but his blood tests came back normal.” The diagnosis? A cold…with purple spots).

Last night we gave Sam his first breathing treatment and he didn’t wake up until 5:45 am. I can’t remember the last time he’s slept that long. I can’t remember the time I’ve slept that long.

We have a lot of lifestyle changes to make. We’ve been told that we need to give Sam a year for his little body and littler lungs to heal. No fragrances whatsoever in the house. No scented candles, no scented cleaning products, nothing. No being around sick kids. No preschool (they said to take a year off now so that when he’s four he’ll be ready to enter preschool and face the germs). Pretty much they want him in a bubble.

Tomorrow we will head back to Riley for a sleep study. Sam will be hooked up to monitors and machines and will have an ace bandage wrapped around his head to keep him from pulling out the wires (I can already tell this is gonna be loads of fun). They will monitor him to see how bad the apnea is and if they need to remove his tonsils as well.

So if you think about it, please pray for Sam tomorrow night (Friday) as he undergoes these tests. I’ll bring my camera and try to post along the way. Like I said, I’m sure it’ll be a barrel of laughs.

The hoofs have rounded the corner and now we know we’re looking at a zebra.


Elizabeth Glass-Turner said...

oh Mandy, we know how frustrating medical mysteries are and how draining prolonged ones can be - and that's without the sleep deprivation...

well, it was strange the other day: we've had so much going on but in the midst of it God kind of put you guys on my heart, to pray for you. now i know why.

praying for Sam. so sorry the little guy is going through this.

rest well.


Sarah Sanderson said...

Oh wow Mandy! I'm sorry you've had to go through all that. Poor little guy! We will be praying for you all. I hope the surgery goes well.

Megan Collins said...

Praying for you guys- he is blessed to have parents who didn't stop fighting to find out what was wrong! Prayers for quick treatment and nights of sleep ahead.

Tamara Bounds said...

I have a feeling Sam will make this process really, really interesting! You've got to be sure to post his sure-to-bring-a-smile comments along with pics. Make sure he takes a few animals with him.....a zebra, perhaps :)

Gwen said...

Oh Mandy, it's got to be the worse when you know something is wrong, but have no diagnosis. I'm so glad you got into Riley so quickly for one thing, and secondly, so happy to know you are getting to the "zebra" side of things.

I will definitely be lifting you and Sam in prayer.

How frustrating that he couldn't sleep but knew that he wanted to. He will be a happier and more content little guy I'm sure when this all begins to even out.

Megan said...

I can't believe what a warrior parent you are, to be going through all this worrying in ADDITION to a new house, new city, new baby....! So glad you guys are on the right track. As much work as the lifestyle changes are going to be, it must feel WONDERFUL to have a (treatable!) diagnosis.

Laurie said...

God has given Sam the parents he needed to see zebras! Reread Ps 46 and note that after the mountains shaking is one of the most frequently quoted verses..."Be still and know that I am God." Sending prayers...and thanks for sharing.

Jenell Buday said...

Wow, I can't even imagine the fatigue you have all been through. I am so glad that you finally have some answers and will be praying for Sam and your family as you enter this new way of life.

nancy joldersma said...

Wow, unbelieveably hard and yet praising God for some definite answers!! Praying tonight Mandy!

Elizabeth said...

Poor little guy! Will be praying for you guys tonight!

Sara said...

Mandy, I'm glad that you got a diagnosis that isn't too "zebra-ish" and that allows Sam to sleep more at night!

(I am reading the blogs backwards, so I'm not caught up to present day, but hope everything is still going ok!)