Saturday, January 17, 2015

Dirt Fairy and the Quest for Sleep

Evie was three months old when the symptoms started. Tossing and turning, waking frequently, snoring, fighting sleep, needing help to get to sleep.

At first, we thought it was just her being an infant. But by 6 months she was addicted to a bouncy chair and waking 20-25 times a night, I knew there was a problem.

Sadly, her doctor did not agree. Wait it out. Maybe she has reflux. Let her cry it out.

So we let her cry. Within 5 minutes of crying, she had vomited all over her crib, herself and the floor. Well. That sucked. Crying wasn't going to work.

Months went by, she outgrew her bouncy seat and finally accepted the swing. She burned through three swing motors over the next year. Partially because of lots of use, partially because Graco apparently doesn't build motors to accommodate 14lbs. even when the manual says that the swing is good until a child is 20lbs. But they DID send us all of our replacements rapidly when I call them with all the fury of a sleep deprived mother. 

We finally talked our Doctor into a referral to a sleep specialist. But when I called Dr. Ji's office to set up an appointment, I found out that it would take them 6 months just to GET to our referral. After that, 3-4 months for an appointment. I could speed this up by having our doctor call them and tell them she had a more urgent problem. But of course, our doctor didn't agree that her problem was worth a phone call. Evie was 14 months old when we got the referral. She was waking 20-25 times a night, snoring, fighting sleep, tossing and turning, waking often and being hyperactive and pissy all day.

At about 1 year she started showing signs of having a sensory processing disorder. Seams and weird fabric and crunchy plastic on her crib mattress were making her angry, so we started taking measures to reduce those things. Inside out jammies, super soft fuzzy blankets, foam over her mattress to take away the sound from it.

About this time she also started with the food aversions. She wouldn't eat anything crunchy or hard. She wouldn't eat anything gooey. We had cheese, apple slices, milk, grapes, sauteed chicken and bunny crackers on the approved list.

She became hyperactive, burning more calories than she was taking in and leading our Dr. to ask for weight checks on her as she was getting taller, but not weighing any more.

Still she couldn't sleep. She would fall asleep in our arms and we would put her into her crib, she would last about an hour up there before she woke up crying so hard she was gagging, during her hour in her crib she tossed and turned and rolled and scooted. We then would put her into her now non-swinging swing and she would fall back asleep.

Soon after Easter, when she was 1.4 years old, she fell asleep on a dog bed, and it was all over from there. She would sleep on the bed, it was bigger than her crib mattress, and it was soft and fuzzy. So we washed it, we put her blankets on it, and she slept better. No more waking 15-20 times a night, we suddenly dropped to 5 times a night and we all rejoiced.

Dr. Ji's office called, they had finally processed our referral and we could set up an appointment. The soonest one was 4 months out. I scheduled it and put it on the calendar, but forgot about it as things worsened. 

Then, the staying up late started. She was resisting sleep. She would keep herself up until midnight or later. We started bed time at 6:30 and from 7:30 until whenever, she would alternate between dozing off and jerking awake and then jumping on the couch.

Evie had grown attached to her dog bed. Sleeping in her own bed led to episodes of vomiting from crying too hard, waking more often, and then she started climbing out of her bed.

We wound up switching doctors around the middle of summer 2014. I had some issues and our doctor at the time was dismissive and rude to me, she had never listened about Evie and I was just DONE with them.

Evie turned 2, and we moved her and her brother into a room together, thinking that maybe she was lonely and he would be another person for her to be around. It didn't help. We made her bed into a toddler bed so that when she climbed out she wouldn't hurt herself.

In October of 2013, we went to our appointment with Dr. Ji. I almost didn't go. I was so pissed off at our doctor for ignoring all of our concerns, I was tired, sleep deprived, angry all the time and if it wasn't for pictures I wouldn't remember any of my daughter's infancy. My 4 year old son was acting out and he began to throw tantrums again. I was in despair that anyone could help me. I was not in the mood to be dismissed again.

Dr. Ji was amazing. Is amazing. She listened to me, she really heard me. She spent almost 2 hours with us and saw how Evie was being hyperactive and crazy. She believed me that something wasn't right, she ordered a sleep study. I felt like maybe there was hope after all. She started Evie on a dose of Melatonin to help her FALL asleep at a reasonable time.

Almost overnight there was improvement. We gave her 1mg of melatonin, and she slept. She fell asleep. At 7:00. Sure. she woke at 9, 11, 1, 3, 5, 6....... She rolled and tossed and snored and snorted and gagged and cried. But that was our normal now. We would spend the time getting her to sleep. My husband took the 10pm to 2am shift, he stayed up late to be there for her, because once he was asleep he was dead to the world. I got the 2-7 shift, waking up with her and helping her fall back to sleep, holding her when she cried. She was sooooo tired. she wanted to sleep so much.

We showed up at Randall Children's Hospital with a dog bed, pajamas, and melatonin in hand for our sleep study. I gave Evie her pill and we watched her get drowsy. She was hooked up to all kinds of things. She fell asleep and the study began. From the moment she fell asleep, she moved. She tossed and turned and kicked and rolled. She tangled up wires on her head and chest, she woke many times. I got NO sleep that night. I think I spent about an hour asleep total but in 15 minute segments. 

We were sent home and I got to put her in the bath and scrub paste out of her hair at 6:30 in the morning before we BOTH collapsed on the couch and slept for an hour. My husband took Liam to school that day and I was so grateful for it.

A few days later we went back to see Dr. Ji. We had the results of the sleep study. Evie had roused from deep sleep 96 times in 8 hours. She had 84 episodes where her breathing became restricted, and one time where she stopped breathing for 27 seconds. She had rapid limb movements and that was waking her as well. Final diagnosis, moderate obstructive sleep apnea. Our orders were to find an ENT and see about getting her tonsils and adenoids taken out to open her airway.

She also was diagnosed with low iron, which could be a cause for her limb movements that were waking her.

So, we went to our normal doctor who gave us a referral to an ENT, no problem. This doctor loves that I do the footwork for her, I find who I want to see and she gives me the referral. We went to go see Dr. Ghaheri at The Oregon Clinic. He is a super star ENT who got rave reviews and we had lots of hope for him. He looked at Evie and said that her tonsils were not big enough to justify taking out. But to go get a second opinion from a pediatric otolarongologist.

I messaged our clinic and asked for a referral to one of those. They said they had one, I would go see him. So I set up an appointment and waited and went and we got there and we didn't even get to see the actual specialist, just someone else. But HE assured us that the guy would totally take out Evie's tonsils. I asked a lot of questions, and in the end, decided that no. This guy wasn't for us. He didn't want to do it because he saw a problem, he wanted to do it for the money. I googled him and his little assistant when I got home, and got nothing but BAD reviews. And discovered that he was NOT a pediatric otolarongologist like I had asked for, he was an ALLERGY SPECIALIST!   Auuugh! Not what I wanted.

I called Dr. Ghaheri back and asked for help, he gave me the names of two pediatric otolarongologists, one of whom was affiliated with our main medical provider! How they didn't find him I don't know, unless the person who did the referral was just lazy.... But we got a referral to them and now I am waiting for THAT to get processed and get the phone call saying we can schedule an appointment.

Evie is now 2.25 years old. She is hyperactive, easily irritated, prone to tantrums over everything. She can not sit still long enough to learn, so she doesn't know her colors, or shapes, even when I try to make it an active game. She throws things, she hits people. If she doesn't get her way she screams until she gags. She wakes a few times a night, though this week has been good, better than last week. She snores like a lumberjacks chain saw, and she wakes up gagging and crying in distress.

If her tonsils are not enlarged and causing this, I am at a loss as to what is. I just take life one day at a time and try to find ways to keep her happy without turning her into a spoiled brat.

She still will not eat many things. She just wants milk, or soft foods like pasta (nunu's she calles it), dried fruit is ok sometimes. Granola bars are out. Scrambled eggs are ok, but toast is a big nono. Smoothies are usually a good thing though, so we're doing lots of those.

We tried her on an iron supplement for the limb movement issue, but it had her so constipated that it set us back MONTHS in potty training because now pooping hurt, and she was not having it. 

I wish there was more I could do for her right now, but I just have to wait and be patient and maybe we will get an answer soon. I sure wish I could help my Evie sleep more. I wish I could sleep more. I want to find out how to help her. I want this to get better.

Wednesday, January 7, 2015

I hate blogging

There. I said it.

I hate the feeling that I HAVE to post anything. That if I don't post something for a week or a month or a year that somehow I have failed at blogging.
So maybe I should say I hate what I thought blogging was supposed to be.

But I LOVE having a place to go more in depth than social media.

I love the idea of sharing my ideas with anyone who gives a damn.

I don't like feeling like I can not be myself for the fear of pissing someone off.

So.... I want to blog, and I am going to do it my way. Updates are when I have something to say. If I offend you, just stop reading.

And I am not about to write a summary of all the crap I have been through this last year and a half. I've lost folks who I love and I don't want to drag all those feelings up again.

The important thing I DO want to write about soon is that Yes my daughter has sleep apnea, we're all tired as hell. I've seen the darkest side of dawn and felt despair crash down on me in waves. I've been dragged through my daily life trailing sleep deprivation behind me like toilet paper stuck to my shoe. I have given up on playing nice with the doctors and I am gently but firmly pushing at them to help me fix this, to help me help my daughter get some sleep. I've cried in front of strangers, yelled at undeserving receptionists, had too much wine to drink a few times while trying to find any way to cope for just one more day. I've given in to the demands of a two year old just for the promise of 30 more minutes of sleep. I am not proud of everything I have done, but chances are I will do it all again.

I want a blog so I have a place to spill all these things that rattle about in my head out into the world and maybe somewhere down the road someone who needs my words and thoughts can find them.

So I am going to blog again, but I am not promising rainbows and sunshine. I'm promising my truth and my heart laid bare. As stated by Anna Nalick "These words are my diary screaming out loud and I know that you'll use them however you want to."

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