Sleeping during a Sleep Study? HA! (Understatements and Good News)

Our son is an awesome little trooper! He did so well yesterday and last night for his Polysonogram (Sleep Study) and Esophageal Reflux Study.

I have to say, you all must have prayed hard for us. Elijah handled the whole ordeal like a brave little boy and was such a sweetheart.

Granted, it wasn't fun (that's probably an understatement). We are definitely glad it's over.

To start the day, the diagnostic technicians put a reflux sensor through little man's nose into his esophagus (that's what you see taped to his nose in the pictures). Elijah didn't like it (that's probably an understatement). He didn't like being held down, nor could he understand why I wouldn't let him down from my lap afterwards. He fussed...a lot (that's probably an understatement).

Eventually, the little guy resigned himself to the fact that he wasn't going to be able to get down from my lap. We spent all afternoon and evening in a rocking chair playing with toys. What a trooper! I was glad that we were allowed visitors (something we didn't know until the last minute). Aunt Karen dropped by for a couple hours and daddy came after work. All in all, the day went by pretty fast.

Then came time to sleep. Ahh...sweet sleep. Right before bed, they attached a whole bunch more tubes and sensors. Um, we didn't get very much sleep (that might be an understatement). Elijah, who has been sleeping through the night in his own crib more often than not, was up about 50 times (okay, that might be an exaggeration). In the middle of the night, they pulled a bed into our room so that Elijah could sleep with me because he was so restless. That helped, but neither of us got much sleep. Poor guy. I was having a hard time sleeping. I can only imagine trying to sleep with all that stuff taped to me.

BREAKING NEWS! YAY!!!!! I got a call from the sleep doc as I was writing this (we weren't expecting news for a couple of weeks).

There is good news and bad news...The good news? Elijah doesn't have sleep apnea! Woohoo. Happy dance time!

The bad news? Elijah has pretty severe reflux...which, honestly isn't that big of a surprise. The great thing is that his reflux isn't causing apnea, which is what worried us. So, there you have it. A test summary and results all at once. This is really, really good news. Now we just need to figure out what to do about his reflux. We'll be waiting for a report from the GI doctor.

Even with all that stuff attached, our little dude managed to give us a cheesy smile. What a sweetheart our boy is! Who can resist that cute little face?

Tweet

Scared of Sleep

We got Elijah's pulse-ox results today. The results were "abnormal but not at all dangerous to Elijah." Abnormal is definitely not what we were hoping to hear. Here's what happened: "Elijah had 120 de-saturations below 89% that totaled about 20min (for combined studies) over about 22 hrs of sleep". That doesn't sound so good to me. That means every night he's probably not getting the amount of oxygen he should for a total of 10 minutes.

Honestly, the results were a bit of a surprise to us. Any time we had looked at the monitor the two nights we had it, Elijah's saturations were fine. We didn't sit up watching it all night and I'm thankful that I didn't. Before I start beating myself up for not noticing the de-saturations, how would we have known? For both of the nights that we had the monitor, Elijah woke up in the middle of the night and spent the rest of the night sleeping (literally) on top of me. I didn't notice a thing. His de-saturations are definitely subtle. So, he's probably been doing this his entire life, we just didn't realize it. That makes me so frustrated and upset. Not getting good sleep is definitely bad for your development and it makes me sad that he's got one more thing working against him.

So, what's next? My awesome hubby (see previous post) got us in to see the sleep doctor this Wednesday - basically by calling and bugging the office people. :) They fit us in with a shorter appointment (we have a half hour when they usually like to do an hour). We have to meet with a sleep doc to talk about Elijah's history before they will order a sleep study. Hopefully we can do a sleep study soon so we can get to the bottom of the problem - we need to find out if the problem is brain-related or if Elijah has some sort of obstruction in his airway. I'm not really sure what the course of action is for either, but I'm already starting to envision Elijah's room with monitors and oxygen and that makes me sad.

Sometimes I feel like "what next?" Just when life seems to be plugging along, something else gets thrown at us. We'll deal with sleep apnea. It's not the end of the world, but at times it feels like it is. It's hard to put things in God's hands.

Sleep apnea would actually explain a lot when it comes to Elijah. He's never been a good sleeper (although, since his second set of HBOT, he has been sleeping better - falling asleep in the highchair and the car as the pictures illustrate). I'm glad we don't let Elijah cry it out - he can sleep in bed with us, he can sleep on top of me, he can cry for me in the middle of the night…as long as he's safe.

So, here we are in limbo. Waiting to know more, but a little scared of the sleep that could be harming our boy. I'll keep you all posted.

Tweet

Pulse-Ox

Tonight Elijah is wearing a pulse-ox on his little foot. Pulse-ox is short for pulse-oximeter; it measures a person's pulse and their oxygen saturation...hence - pulse-ox - get it? Monitors remind me of the NICU; their incessant, worry-inducing beeping was not something I hoped to relive in my lifetime. But, with that aside, I am grateful to have this device in our home for two nights.

Our pediatrician took our concerns about Elijah's night time breathing seriously and arranged for the monitor to be brought to our house. A nice man came over today and taught me how to use the pulse-ox. My only complaint? The medical supply place is scarily simliar to the cable company. I was told they would come between 9 and 1 and they showed up around 12:45. Oh well, Elijah had no therapy today, so we just hung out at home (which, honestly, is kind of nice).

Hopefully, the pulse-ox will show that Elijah is getting enough oxygen while he is sleeping. If not, then at least we'll know and we can do something about it (as to what that something is, I'm not sure).

The pulse-ox is meant to gather data. I thought that we would be listening to alarms sounding all night, but was relieved to learn that we were supposed to set the parameters really low and really high as to not set off the alarm. Good! I thought. At least we'll get some sleep!

Ha! Oh, how I now laugh at that thought. Elijah took forever to fall asleep. I don't think he was too thrilled about having some device taped to his foot. I suppose we could have done the taping after he feel asleep, but with our light sleeper I'm pretty sure it would've been impossible. I'm hoping he'll sleep through the night now. On that note, I should go to sleep. We're praying that the monitor will ease our fears and if not, that it'll give us some answers.

Tweet