So remember how I thought the pediatrician just thought I was angry and maybe a little crazy? And she was brushing me off? I take it back. The next day she called to say she’d personally gotten us in with the ENT. When? Oh, immediately! Could I just go over there NOW? (I was wearing my pajamas when she called. Also, Monkey was at school. But we made it, somehow.)
The ENT said many interesting things, making noises with his mouth-hole that sounded like “here are the things that are clearly wrong which I can see even before we start testing further” and also “chronic infection that has probably been making him miserable for a long time” and finally “I had another case just like this with a kid with Asperger’s and I’m telling you that you will not BELIEVE the change once we get him treated.” I am a little bit in love with the ENT now. Sorry, Otto.
(Oh, don’t feel bad for Otto that I said that! He doesn’t mind, on account of HE IS BUSY DYING. Both Otto and Chickadee are so beset by flu that I am starting to feel like Clara Barton, only way crankier. And neither of them care what I do right now as long as I periodically croon “poor little bunny.”)
So the ENT made up a list of tests we should do.
First, a nice nurse took Monkey away and did something called a tympanogram, after which the ENT informed me that Monkey probably could barely hear out of his right ear at all. “What?” said Monkey. HAR HAR. Not noticing your kid is half-deaf is funny!
Next, they told us he should really have a sleep study, because his tonsils are big and his head is filled with fluid and possibly his adenoids are trying to eat his liver. I may have made up that last bit. But the ENT said he would “bet money” that Monkey has sleep apnea, and so he wanted to check it out.
Fine, I said. I am an agreeable sort. Great, he said. I’ll have the nurse set you up.
When can you get to the sleep lab? asked the nurse. How about tomorrow night? Uhhhhh. Okay, sure. (This happened on Wednesday. So the tomorrow in question is now yesterday. You’re welcome.)
We were given a sheaf of paperwork and directions to drive to the lab and call this number when we arrived to be let into the building. Fine. I medicated and poor-little-bunny-ed my husband and daughter before we left, last night, and then Monkey and I drove an hour to the lab, which was in a deserted and somewhat spooky area. And then I called the number given to me.
It went straight to voicemail.
I stayed calm! I waited a few minutes and tried again. It went to voicemail again; I left a message. I called Otto, and asked him to get online and check the address and such, to make sure we were in the right place. Monkey stood next to me out in the cold, in front of this deserted building, in his jammies and robe and coat, and said maybe we should go home.
We had the right place. I called the number again. Voicemail again.
I called the ENT’s answering service and explained the problem. They told me to call the number I’d been calling; I told them it was going to a phone that appeared to be turned off. They told me to ring the buzzer; I told them there was no buzzer. I asked if we were maybe at the wrong door? They said they’d page the doctor.
I called Otto again. I may have been a little freaked out by then.
Monkey and I ended up driving around the building until HALF AN HOUR LATER when the tech called and insisted that he’d “called me back several times.” Which was complete and utter bullshit. He’d left his phone off and then (eventually) either the answering service or the ENT himself called the direct lab number and chewed him a new one, is my guess.
We parked by the correct door and got let in and Monkey grumped at the tech and we were taken to a very nice room with a big bed and told it would be ANOTHER HOUR before he’d be wired up. By this time it was already an hour past Monkey’s bedtime. He whined a little and then promptly climbed into the bed and fell asleep.
For an hour I listened to the tech chat on the phone with a friend and then his girlfriend. Eventually he sauntered in, woke Monkey up, and started hooking him up to every wire in the entire universe. Monkey—having been woken up to be wired—was mightily displeased and kept trying to crawl back into bed. It was fairly pitiful.
Eventually he was all hooked up and we were allowed to turn off the light and “sleep.”
HAHAHAHAHAHAAAAAAAAAAAAA. HA. Ha. Oy.
Monkey is a stomach sleeper. Guess which is the ONLY position you are not allowed to be in for a sleep study? NO, REALLY, GUESS! Apparently it compresses the chest belts which are there to monitor respiration. So every time Monkey turned to his stomach, the tech would get on the intercom and tell him to turn over. And then Monkey would cry. And I would fantasize about punching the tech.
In the meantime, I was parked in a giant leather recliner next to the bed. It was a pretty comfortable chair, really, and I should’ve been able to sleep in it. Except, I couldn’t, because:
1) Monkey didn’t sleep
and
2) Leather is slippery.
I brought a pillow with me, but every time I tried to arrange it so that I could actually, you know, USE IT, it would slide out from under my head. I am not even kidding.
Over the course of the 10:15 to 5:30 timeframe when Monkey was supposed to be SLEEPING so that he could be STUDIED, it went something like the following:
10:15 – 11:00 p.m. Tech chats on the phone with his buddies, loudly, just outside our door, pausing only to bark through the intercom when Monkey flips the wrong way. I continually futz with my phone to play “soothing music” for his royal I Want To Sleep On My Stomach Whyyyyy Caaaaaaan’t I-ness.
11:00 – 11:20 p.m. I doze off.
11:20 p.m. Monkey says he has to use the bathroom. The tech comes in and helps him and his wires get up.
11:22 p.m. – 12:45 a.m. Tech chats on the phone some more. I switch the soothing music to white noise. Monkey flops around in the bed like a beached fish.
12:50 – 1:20 a.m. I doze off.
1:20 a.m. Monkey asks if it’s time to go home.
1:21 – 2:23 a.m. Monkey dozes, still flopping around.
2:24 a.m. Monkey becomes convinced that the pulse oximeter on his finger is making his entire arm fall asleep. GET IT OFF GET IT OFF IT HURTS I HATE IT CAN WE GO HOME NOW? The tech comes in and redoes the tape. Monkey continues to whine and grumble.
2:25 – 2:45 a.m. I whisper useful sentiments like “shhhh, it’s okay” and “just relax, buddy.”
2:46 a.m. Monkey says he has to use the bathroom. The tech comes in and helps him and his wires get up.
2:48 – 3:10 a.m. Monkey sobs softly about wanting to go home while I precariously teeter on the edge of the bed—so as not to interfere with any wires—and rub the patch of his back not wrapped up or covered in sensors.
3:11 a.m. I slide back into the recliner. Monkey is quiet.
3:30 a.m. Monkey asks if it’s time to go home.
3:31 – 4:50 a.m. Monkey flops around in the bed like a beached fish.
4:50 a.m. – 5:05 a.m. I doze off.
5:06 a.m. Monkey says he has to use the bathroom. The tech says if he can wait just a few minutes, we can wrap up and be done. So we wait until he starts barking orders like “Look right. Now cough. Now look left,” through the intercom. Monkey complies, whining all the while that he really, REALLY has to go.
5:15 a.m. The tech comes in, turns on the light, and begins removing all of the leads and wires. Monkey dashes for the bathroom as if he hasn’t gone in days.
5:30 a.m. I have gathered up our things, filled out the post-test paperwork, and realized that Monkey’s head is covered with conductive goo.
5:31 – 5:35 a.m. I wash Monkey’s hair in the bathroom sink. He chats the entire time about how he’s not tired at all and can he go to school and can he bring cookies and do I know if it’s pajama day?
5:40 – 6:55 a.m. We drive home. I stay awake the entire time! So proud of me!
7:20 a.m. I take Monkey to school and he acts perfectly normal. I nearly break down weeping every time someone so much as looks at me, I feel so crappy and tired, but he is FINE. I suspect he is a pod person.
I asked the tech before we left if Monkey actually SLEPT long enough for him to get the data he needed, and he said “he slept a little, so it’s gonna be kind of borderline.” I don’t know what that means. But I do know that I will cheerfully choose removing his damn adenoids with my own two hands and a pair of pliers rather than ever go back to that horrible place. They should call it the HAHAHAHA YOU CAN’T SLEEP, SUCKER Lab.
Last night is DEFINITELY going on the “after all I’ve selflessly done for you” list I keep in my head. So far it consists of 1) labor, 2) that one stomach flu and 2) this sleep study.
BUT! It sounds like you might be on the road to getting some answers! Right?
There I go with my damn silver linings again. Feel free to punch me in the teeth, okay.
And I promise not to look at you while you do it.
Mir, You are a saint, really and truly! What a great mother; now, go take a nap, pronto!
Despite the sleep study hell, which i would detail to MD, you are finally on your way to get some answers:)
Oh yea…thanks for the stomach sleeping description…*I* sleep on my stomach and I go for my sleep study tonight. You make it sound so pleasant …. not.
That whole experience sounds painful, but I am happy that the ENT appears to have a brain! And uses it! Hopefully they figure out how to help. Take care!
I’m a little surprised you didn’t talk to the tech about his behavior. Totally unacceptable to be on the phone all night, especially that close to the person trying to sleep.
You’re a better woman than I, but we’ve known that for years :)
I am so sorry you both had to go through that. But, it is helps solve some of these problems it will be worth it in the long run. Hoping and praying for the best for you, Monkey, Otto and Chickadee.
First- encouraging that the ENT has seen a simiar case before! Em had to do a shorter sleep study during the whole ‘”Huh, we don’t know what’s wrong with your kid, let’s test out the wazoo” period. It. WAS. SO. HARD. for so many reasons.
Unsolicited assvice-you have got to write a letter to the Sleep Lab AND the ENT. The lab director likely does not know his tech is acting so unprofessional. Sleep study business is highly competitive (and big $$) and the ENT can easily choose another group to do the study if his patients complain about that one. It won’t change Monkey’s experience, but might make it better for another Monkey in the future.
Sweet dreams, sweet Mir.
*sigh*…… it’s a wonderful life.
As for the flu – Alka Seltzer flu seems to give relief without mega side effects.
Um, yeah. The scientists need to figure out a way to make new sensors that will allow people to, you know, SLEEP during a sleep study. Morons.
This is, though, progress, and I think I’m a little in love with the ENT, too. Here’s to hoping you have definitive answers and a treatment plan before Christmas, and can go enjoy the holidays without this looming over you!
Isn’t it funny how gratifying it is when someone like a doctor, with AUTHORITY and stuff, confirms and justifies what you already know!! But it feels SO GOOD when they essentially say, “No, you’re definitely not crazy, he really does have an infection… You’re not overreacting, In fact you’ve been holding together amazingly well for how bad the situation is.” THANK YOU DOCTOR for confirming what I suspected!!!!
Sorry about the sleep study, that sounds hellish!! It also makes me want to go take a nap.
I had to do a sleep study recently, overnight followed by a day time nap study. I am a grown woman, but I was teetering on the edge of totally freaking out several times through out – sleep studies are AWFUL. I don’t know how they can get children to do it. You have to be able to reason through the anxiety and irritation, and really be able to say ok, I’m here because I have a problem and this might fix it – so I need to get over all the wires and the goo and the thing in my nose and the weird positions and just relax. Even with the constant self pep talks I slept like total crap (though, not crappy enough to evade the narcolepsy diagnosis).
Y’all are both troopers. I hope things are on the up and up.
Good Grief Mir!!
Secretly I think you’re a robot, how in the world are you doing such a fabulous job of appearing keeping it together? Seriously, I’d be a wobbling jumble of jello if I was dealing with what you’ve got going on.
My sister did a sleep study about a year ago, she’s also a stomach sleeper and didn’t sleep the night of her lab test. She was able to do another test which some insurance company’s don’t find quite as reliable but she was able to wear what amounted to a special pulse ox meter at home and they determined that she did indeed have apnea. I hope the ENT has other options for you.
I’m praying for you that despite all the nonsense you have going on that you have the best and most peaceful Christmas ever.
The things we do for our little ones. It goes on and on for the rest of your life but you know you would NOT have it any other way. I’m hopeful that this doctor is on to something that will make him all better. And you, too!
Two of my girls just had their tonsils & adenoids out last week. Part of it was due to poor sleeping habits (tossing & turning, snoring) and also recurrent infections. I have heard having them out helps a bunch with that part. It’s a long two weeks of recovery from the surgery though, well worth it! Get some sleep!
Sounds like you are on the road to having things figured out. The ENT gets a big thumbs up for figuring out what the problems are so far. I would report back to him about the tech that was so unprofessional. Hope the rest of your family gets over the flu fast and that you get the rest you need!
Ahhhh, the good doctor we’ve been praying for. I know many good docs and just knew you’d get the right one eventually. And with a side of hope for improvement? Even better. Sorry the sleep study was so crappy. That tech needs to find a new job. My husband had many tales of kids struggling with sleep studies back when he was an EEG tech. Torture for everyone involved, including the tech (if they care about their job).
I’m so glad about the ENT and I’m so sorry the sleep lab tech had the professional skills of a rat.
Thinking good thoughts for you.
Holy crap, that sounds awful!
Oh the letter of complaint I would send about that lab tech… it would be just short of bursting into flame…
Glad you found the ENT, though. Solutions are just around the corner… hang in there!
I love your ENT. Let’s give a big cheer for doctors who actually care and can make things happen! WOOOT! I hope you get some answers for Monkey soon. And some sleep for you :)
The tech sounds like a total douche canoe. I would second (or third, or whatever it is!) the idea of writing a letter or making some sort of comment regarding his conduct. Sleep studies are bad enough when you’re an adult (yeeah I *totally* slept during mine :P ) but for a kid…especially a kid who thrives on routine – I just can’t even imagine! I’m so glad you’re starting to get some answers and make some progress! Hooray for competent doctors!
Dude, I had a sleep study a couple of years ago and it was, in fact, a painful experience, though I was nice enough not to involve my mother at all. Guess who else is a stomach sleeper?
HowEVER. Getting a sleep apnea diagnosis (and the resultant CPAP) has CHANGED MY LIFE. CHANGED IT SO MUCH. And yes, I know I’m yelling and it’s only because I don’t have any way to make the letters even bigger, because Oh. My. God.
If he has sleep apnea, you know why Monkey seems totally normal today? Because he is so used to being sleep deprived that he feels pretty normal. It depends on the severity, of course, but they measured me at 83 events (an event means you stop breathing for at least 10 seconds) an hour. [Which means, by my math, that every 30-45 seconds, I was being awakened by my stupid body’s incessant need for, you know, OXYGEN. Gosh, I wonder why I was irritable? And falling asleep in meetings. And taking little teensy power-naps during red stoplights?]
Ooh, I so hope this turns out to be the magic bullet it was for me.
So glad to hear its sounding like some progress may soon be made!!!! Yay for you and Monkey!
Regarding flu-ness, read the first few paragraphs of Franklin Habit’s latest blog entry! (Clara Barton, vs.Florence Nightengale…)
http://the-panopticon.blogspot.com/2010/12/queen-looks-at-princesses.html
I had two sleep studies too. First one didn’t have enough actual sleep in it to be helpful. The only thing that made it bearable was the tech – she had to wear a mask too, and said the first time she did she looked at her son and said, “Luke, I AM YOUR FATHER!” Totally made me laugh. A year later and I am still struggling w/ the mask but on the brink of getting it all straightened out. I had to wear a pulse oxygen meter twice at home too, and they said my level got down to something dangerously low at night. Fun fun fun. Poor Monkey for his troubles. I am glad you got a Dr. that LISTENED to you and agreed!
Bummer! I was hoping that it would go a little better for you guys. That pretty much describes how our sleep study went as well. Except that they let us in when we got there and were nice and professional. It still sucked. Especially since we had to wait 2 months to get in for the study and then another month for them to analyze the data so that we could come in and they could tell us that they didn’t have enough data (since he barely slept) to get any conclusive results. They also suggested that we come back and try it again. Ha ha! No. If Monkey is having apnea hopefully it will go away after his infections clear up and all his tissues unswell.
Oh dear, that definitely sounds like it sucked. I hope you get answers soon and that Otto and Chickie get better too!
ahh sleep study hell. I know that world. We have done 3 sleep studies with the 4th scheduled for this spring on my 2½yr old. It’s absolutely miserable! I hope you’re able to find some answers from it!
I hope you’re getting some rest today & yeah! for the ENT! This sounds sort of like the sleep deprived EEGs my daughter has had (4 or 5 times now)… except it’s just us at home with me yelling at her to stay awake!!! All night!!! Then, when we arrive to have the test done & they actually want you to fall asleep, it’s quite a process to get set up (electrodes & such attached to the head), followed by tons of questions from the tech… open your eyes, close your eyes, look left, look right, let me flash these lights at you & try get a seizure… then ok, you can sleep now for about 10 minutes. Then, I’ll wake you up & rip those electrodes off your scalp/hair & send you home. Good times! =) Praying for answers for you, found quickly by the ENT. I hope Otto & Chickie feel better soon & I hope you don’t catch what they’ve got.
That seems like such a tough night, you poor thing. I would be home and straight into bed for as long as possible.
My mom has had to have a few sleep studies done, I don’t know how anybody can manage to get any sleep in there. Poor Monkey, I hope they have their answers soon.
I did one of those sleep studies myself, only I got to do it at home (apparently it’s cheaper to loan patients the equipment than to give us a hospital bed). And I wonder what good it did, since I didn’t sleep very well. I was allowed to sleep on my side, which is what I usually do, so I was a little less of a beached whale, I think, but those wires and sensors sure are uncomfortable! I sympathize with monkey..and you, for having to sit through that! I hope the tests are conclusive somehow and you don’t have to do it over.
(ps my doctor was sure I had sleep apnea too but according to the test, I didn’t. Of course, according to the test I don’t snore either. My boyfriend begs to disagree, though, even when I tell him he must be wrong because look, SCIENCE tells me I don’t snore.)
Oh holy hell. I think you showed admirable restraint in not sucker-punching the damn tech.
I think I’d be complaining about the tech. Egads.
Also, isn’t “poor little bunny” reserved for the man-cold? I surely hope Chickadee doesn’t have a man-cold! ;)
Glad you are finally getting some answers. I took that exact same sleep test, and I found it very uncomfortable, even a little scary, and I am a grown man. So, he was pretty brave to go through that.
Wow, that sounds terribly horrifying. But, HOORAY for the fabulous ENT!
Hurray! A doctor that is taking this seriously! So glad to hear that. Sorry to hear about the “sleep” study rigamarole. Hope the flu doesn’t interfere with the recovery sleep. Otto and Chickie need to get better fast – when it rains, it pours (ha ha! That expression made me chuckle ruefully cause I’m currently reading the basement-gate saga from 2006).
FYI My little guy’s test was negative (yay!) but they want to test for other more rare variances of the condition so still stuck in no answers land.
Oh my goodness, forward movement, somebody who believes there’s a problem, and steps to solve it! What a relief – I’m so happy for all of you, and cannot wait to hear all about Monkey’s miraculous turnaround once he’s all better. I know it’s going to happen, I just know it.
Well, everyone else has already said it, but I concur on both points:
yay! for the ENT; and
yuck! on the sleep-study (from what I’ve heard, they do not sound conducive to ever getting any sleep at all)
I am in awe of how well you held it together. Thinking of my two neuro atypical kids, there is NO way I’d ever be able to get either of them to do the sleep study.
I’ve done the sleep study with my son twice and I have to say your tech SUCKS. Sorry but he was a butt head. I’m glad your ENT is awesome!!!! I know my son had many issues related to his tonsils and adnoids, when we got them taken out at 3.5 he’s been a different kid. He doesn’t get infections in his lungs like he used to and he sleeps better too. I really hope you get some answers!!!!
Oh what fun you’ve had! When my Little Guy was just out of fourth grade, he had his tonsils and adenoids removed. Dad has sleep apnea. I figured the removal was better for my LG. He was scaring me, not breathing at night. I’d sit outside his door and listen and he’d just stop breathing.
Since the removal, nearly three years ago, his snoring has stopped (it could wake the dead) and he breathes at night. He even stays awake during the day. Huge difference.
Yay Mir! You perservered and are getting some answers!! Sorry about the lab tech. My father tried the sleep study thing 3 times and gave up. Couldn’t sleep. Good Luck with that.
Both Toad and Babygirl have had their tonsils and adenoids out, and what a difference. Babygirl shot up height wise, and Toad stopped snoring so loudly at night and actually started sleeping. I’m 99% sure that my husband has sleep apnea – his biological mother does as well – but he refuses to get tested. Because obviously he’d rather torture me by making me have to listen to snoring loud enough to wake the dead than to get treated.
My daughter between birth and 3 years used to stop breathing in her sleep, but when I requested an alarm from the hospital they made us go and stay in the ward for a night with an alarm hooked onto her. I was stunned when in the morning after she had been kept awake all night by constant poking and prodding, lights on and off and loud talking from the nurses, they told me she didn’t have a problem and I should go home and stop imagining it. I think I lost it, yes I know I lost it, words to the effect of “I;m not leaving until you give me the monitor” were uttered and then they shooed us out the door with a social worker in tow. I am so proud of you for managing to function, it was an awful experience that I too would never go through again.
K
Yay for swollen tonsils, adnoids and lack of hearing! Seriously though I am keeping my fingers crossed that like your ENTs previous case this one has a simple wondrous solution too.
Here’s hoping this guy gets your monkey the help he needs!!! Sleep studies suck…plain and simple :)
Ay caramba! You need a fairy godmother, night nurse, personal masseuse and in home barista. That sounds like so many flavors of dreadful. Please tell me you are going to tell the ENT about the jerk tech and his *really* unprofessional behavior.
Also, hooray for answers and diagnoses and their usual conclusion – solutions!!!
My son did 2 sleep studies, one before and one after his tonsillectomy/adenoidectomy/hemorrhaging my wallet-ectomy. Neither one was particularly fun, but thank God he slept! Me? No, not so much…
This ENT sounds like he could be the answer to a lot of prayers. I never went through a sleep study. But I worked on a special project once that flipped my sleep schedule and led to sleep deprivation. Without adequate sleep you can go through the motions but you’re always on edge, over react, get cranky and you also get physically ill if it goes on for too long. So if Monkey has sleep apnea as well as the infection that could explain a lot of his behavioral issues. My fingers are crossed you get good news after the tests are done.
My oldest son, 4, now has a PDD-NOS dx (recd at 3). He had a T&A at 2.5 years. Pre-surgery, he had about 3-4 words, no pointing, tons of balance issues. Had the surgery and as the nurse is carrying him to his hospital room out of recovery, he says “I Want My Mama!!!!” First full sentence ever. It was transforming. Did it cure what we later learned was mildish autism…no. But he was speaking in paragraphs 3 months later. Balance was also much improved. Good luck. Feel free to email me if you would like to discuss.
Catching up after dealing with wee flu-ish ones at my own house. At Christmas. FUNTIMES!
So I hope this is all a distant memory for you by now. But getting back to that part where you were leaving Otto for the ENT…are you just giving Otto away, or are you maybe raffling him? (And how much are the tickets?) :)
Hope everyone is on the mend!