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Who needs sleep anyway??

Apparently not Raya. At least her brain doesn't seem to think so. It hasn't for about 2 1/2 years now. This will be one of those posts that's a little uncomfortable for me to share, but I feel like it's an opportunity to help people understand what it's like to have a child who has significant sleep difficulties. We're not just talking about a kid that fights bedtime. All kids at some point protest having to go to bed, and yes, that is difficult to deal with too. This is not at all what we're dealing with though, so hopefully this post will help explain the difference.

I don't remember exactly when Raya's sleep problems started. She had started sleeping through the night pretty early on. In the beginning, we actually had to wake her up every couple of hours overnight to try (usually not very successfully) to get her to eat. One of the best parts of having the NG tube was that I could just let her sleep and feed her through the tube instead of waking her up and trying to get her to drink a bottle that I knew she wouldn't drink. When her vomiting got worse, she became like clockwork. She always ALWAYS woke up between 10 and 11 at night to vomit. If her stomach happened to be empty (which was rare), she would still wake up and retch (dry heave) for a few minutes. She also always woke up between 5:30 and 7 in the morning to vomit. I started calling her my little vomiting alarm clock because that was what I woke up to every single morning. You think alarm clocks get your heart pumping? Try waking up to the sound of your child vomiting every single morning.

Aside from that, she slept pretty well. Even after the vomiting stopped though, she still continued to wake up between 10 and midnight most nights. As she passed the age of 2, it gradually got more difficult to get her to go to sleep at night. We started trying things like melatonin, lavender, getting her transitioned off of night feeds, and a couple of different sensory routines that her OT developed for us. The melatonin never did anything for her at all. What most people don't understand about melatonin is that if your body is not deficient in its natural production of melatonin, taking more melatonin will not help you sleep. All it does is help to regulate your body's sleep-wake cycle, so if you already have enough melatonin in your body, more will not do anything for you. That was the case for Raya. The lavender and sensory routines helped for a while but gradually stopped doing anything for her.

About 6 weeks before her 3rd birthday, we moved. It was only about 6 miles, but it completely threw her body for a loop. Her motility tanked, her sensory issues went through the roof, and she was just a mess. None of that helped her sleep difficulties. Right after she turned 3, she started preschool, aka a petrie dish in the form of a classroom full of 3-5 year olds, during cold & flu season. Within the first couple weeks, she caught her first of many, many preschool colds. The increasing lack of sleep that she was experiencing made it difficult for her immune system to fight off all the germs that are in a preschool classroom, and we started to get concerned about the possibility of severe GI complications that could result from the illnesses she was picking up at school. A couple weeks after she turned 3, we went to a developmental pediatrician who helped me to realize that much of what we were seeing with her was the result of anxiety. She suggested asking Raya's care team about letting us try a medication called atarax to help her relax in the evening and hopefully be able to fall asleep.

A week later, she had surgery. In pre-op, she was given a dose of oral versed through her G tube to help chill her out while they got her into the OR and put her under. She had what is called a paradoxical reaction, meaning that instead of making her calm and relaxed, she became combative and agitated. She was like a 30 pound angry wet noodle. I don't know what happened once they went through the doors to the OR, but when the anesthesiologist came to talk to me, he told me that she should not ever have versed again. Like, ever. Because of her reaction and because of her history of waking up from anesthesia like an angry wild animal, he gave her a med called clonidine to help her come out of it more calmly. It worked BEAUTIFULLY. She slept peacefully for 2 hours in PACU and woke up calmly and as sweet as ever.

A few days later, she had a follow-up with her neurologist. After discussing everything that was going on, she decided that rather than try atarax, we would just try clonidine since it had helped after her surgery. Since the first dose, clonidine has been a miracle and a godsend for her/us. I remember sitting on the couch with her the night we gave her the first dose and just watching in amazement as she peacefully drifted off to sleep less than an hour after we gave it to her. I may have actually done a happy dance.

Although she is able to go to sleep with the clonidine, she does not always STAY asleep all night. Most nights, she still wakes up about 4 hours after she gets the dose. Incidentally, it usually happens between 10 and 11 pm. Last time we saw neuro, she said clonidine only works for about 4 hours so we now are able to do a smaller second dose if we need to later on at night.

Last Wednesday for her GJ tube placement, we used a dose of clonidine to help her relax for the procedure since I am not allowed into the radiology suite while they place the tube. It did its job and put her to sleep, but she woke up as soon as they put her on the table and tried to touch her G tube. We ended up opting to do anesthesia so that we could get the tube in without traumatizing her. For whatever reason, when I gave her the clonidine that night at the normal time, it did not make her go to sleep. It didn't work the next night either. Or the next night. By Monday night, I was starting to panic a little. She was waking up groggy and exhausted in the morning, falling asleep in the afternoons, and then couldn't go to sleep at night. On Tuesday, I decided that I would not give it to her that night, thinking that maybe it would reset her body and allow her to start responding to it the way she was supposed to again. I figured we didn't have anything to lose by trying it and decided that if it didn't work, I would call her neurologist and see what else we could do.

Tuesday was a busy day. Again, she woke up groggy and was telling me all morning how tired she was. We got in the car and went to OT and feeding therapy, and then had 90 minutes to kill before her GI appointment. We drove home, and both girls fell asleep. I threw together a quick sandwich and got back in the car to drive back to the same part of town for the GI appointment. Raya woke up enough to walk into the clinic, but since we were pretty early, we sat in the waiting room for a while and she fell asleep.

The nurse came out and chatted with me for a while until the medical assistant came to take us back to a room. I carried Raya and the nurse pushed Piper in the stroller. I love going to that office. :) For GI appointments, the weight checks are done with nothing on but a hospital gown so it was super fun convincing a half-awake kid to let me change her clothes. She was SO sleepy!

The GI visit went fine. Nothing exciting to report since we were still too close to the GJ change to be able to tell if we were seeing positive changes or not. She hasn't gained an ounce in 6 or 8 weeks again, so we're going back for another weight check next week and if she hasn't gained, we'll up her calories again. Hopefully we won't have to because that would set us back on increasing her feed rate to decrease her time on the pump, but if we must, we must.

After GI, we went home and did all the usual evening stuff. I sent all the kids to bed around the usual time, and at first it seemed like she was going to fall asleep, but just a little later than normal. Ha ha. It was wishful thinking. Bedtime at our house is 7:00 during the school year and between 7 and 8 during the summer. Here's Raya at 9:15:
And let's pause for a moment to appreciate the irony of the minion card she's holding. Ever since we saw Despicable Me 2 at the summer movies a few weeks ago, the feeding pump sounds like minions to me. "BEE-dow, BEE-dow, BEE-dow..." It's slightly less obnoxious when you think of it that way.

I kept waiting for her to at least show signs of slowing down but it never happened. Then Piper woke up, which is rare, so she joined us in the living room. And puked all over my pillow while I was holding her after she drank her bottle. Thanks, kid.

And here she is shortly after 11:

Piper fell asleep on a blanket on the floor so I let her stay there. The last I remember looking at the clock, it was about 11:45. I woke up briefly at 1:00 and couldn't believe she was still awake, but she was finally playing quietly so I just went back to sleep. At 3:30, I woke up because she turned on another episode of "Deadliest Catch" on Netflix. At that point, I needed to get up and pump anyway (yeah, still doing that) so I put Piper in bed and got everything I needed. Raya sat next to me on the couch (more like bounced around on the couch) while I pumped and we watched Deadliest Catch. She was chattering away about fishing and boats and the toys she was playing with, etc. and still showed no signs of slowing down. At 3:45 am, I finally caved and decided that for better or for worse, it was time to give her the clonidine. This is the picture I took of her at 3:45 am:

See what I mean? This is not the same as a kid that just throws a fit about going to bed. Her body and mind just could not slow down enough for her to be able to go to sleep. If it was something that melatonin, essential oils, and sensory routines could fix, we would do those things. We HAVE done them. Unfortunately, they just don't do enough for her, and there is nothing normal or okay about a child who can literally stay awake all night long. This is why the prospect of her clonidine suddenly not working for her anymore was enough to send me into a bit of a panic.

At 4:30am, we were both still awake. I couldn't keep my eyes open anymore though, so I laid back down on the couch and went back to sleep. I don't know what time she went to sleep but I think it was shortly after I did. I woke up again at 7:30 to take care of Piper and make sure everybody was eating breakfast & doing their morning tasks. Raya was awake again at 8:20, but then fell asleep again for another hour until it was time to start getting ready to go swimming.

I wore her out on Wednesday the best I could, and didn't let her nap. We didn't go anywhere in the car because I knew that would have put her to sleep in a heartbeat. On the advice of the GI doctor, we gave her the dose of clonidine an hour earlier than normal that night and crossed our fingers. It took about 2 1/2 hours, but she finally fell asleep and slept more than she had in a week. (still came in our room and was awake for probably an hour or so in the middle of the night but better than the rest of the week) She woke up yesterday morning feeling refreshed and happy instead of groggy and tired.

Last night, we gave her dose at the normal time and she fell asleep within the normal time frame. I am breathing a huge sigh of relief and crossing my fingers that this is just a fluke and we won't have this problem every time she has to do anesthesia.
She is beautiful when she's awake, but she's a whole other kind of beautiful when she's peacefully sleeping. Especially after seeing how run down and exhausted she got after a week of having her sleep so thrown off. I hate that she needs medicine to help her sleep, but I am so very thankful that we have that option, for her sake and for my sanity's sake.


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