Major Leiland update

So part of the reason life is so hectic is the stuff Leiland is dealing with right now.

For starters Kindergarten begins in just 9 short days. I can't even believe it right now.

Then there are his sleep issues. He's had issues with his sleep for quite some time now. Ive brought it up to MANY dr's about how he just always wakes up so exhausted. Even with sleeping 12 hours most nights.

Back in December 2014 and again in March 2015 while staying in hotels (he was asleep while I was still awake) I witnessed him gasping for air. He's always snored and been a heavy sleeper but this was the first time I ever noticed the gasping. At this time we were looking into issues with asthma being something that was as issue as well. I finally took him into the pedi and we talked about this issue. He began taking daily breathing treatments 2x a day. When this didn't show any improvement he started a protocol to try and diagnose sleep apnea. In my research I learned its actually rather common in kids with asthma. So then we began that protocol - I don't remember it exactly but there were 3 steps. We went through the first two (one of which was the daily asthma meds, and daily allergy meds). Next was to use a nasal spray each night but at that point we were moving to TN.

So at the end of March 2015 we moved to TN. I took a little time to find a pediatrician. Both boys were scheduled for their annual exams. Owen was ASAP since he has just turned 1 and Leiland was right at his birthday. I was not a great fan of the dr (who wasn't actually a dr) we were seeing. After being brushed off time and time again for an issue that I truly believed was a problem I finally switched this year for each of their annual appointments. We saw a new dr who I MUCH prefer. I was getting frustrated enough that I even made a separate appointment with her just to discuss the possible sleep apnea. We discussed his sleep habits (12 hours at night and 2 hour naps still on many days), his bedwetting, and so on. She seemed more focused on his bedwetting than his waking up exhausted. She believed his sleep habits were typical of many kids his age (I disagreed). I also brought up how I didn't believe the asthma meds were doing anything and how we hadn't even needed the rescue inhaler in almost a year. So we stopped those and she wanted to talk again a few weeks later at his 5 year. We talked again and she decided to send him for a sleep study. THANK YOU. Finally something is being done to figure out whats wrong. She didn't believe he had sleep apnea but thought it could be something like restless leg syndrome.

So back in June we went to Nashville and saw a neurologist. It felt like a lame appointment only because it took so long for this dr to basically have me repeat everything Id already written down on the paperwork and he proceeded to type it all into his computer. Why even make me do the paperwork then? So anyway Leiland didn't show any major signs of sleep apnea that he noted, he doesn't seem to have a lot of nightmares, and he doesn't complain of any of the symptoms that would make you think restless leg syndrome. But we scheduled the sleep study anyway. I'm over here just hoping for an answer and terrified they will come back and say his sleep was completely normal.

So we take a 3 week trip to Michigan. No naps really for Leiland unless in the car, he's sleeping like a rock and in my bed. I don't notice the gasping for air but he hits heavy sleep almost instantly and snores no matter what position he is in. He also sweats buckets when he sleeps. Get home from the trip and the next week is the sleep study. We are to arrive at 7pm. Well I am early for EVERYTHING so I get Owen to take a nap and then we head out to Nashville. Decided to make a fun day and go to the mall for a bit before heading to the appointment. Leiland is so excited. Now I have explained this procedure the best I can having never been through it. He's nervous but once he's talked through it he's not telling me no anymore which is great. He seemed extra tired this day. When we arrive we are the first ones there. We are checked into an actual hotel. The sleep study's are done on one floor that has half the rooms set up for just that. We get our room around 730. Then we sit and wait. I didn't bring an iPad or much for them to do. So it was a long night of crabby kids who were bored. I should have put the tv on had I realized how long it would take. At 8 the tech came in. He was very hard to understand. Said something then left. I was so confused but ok - so we wait. I let Leiland play my phone for a bit while Owen and I sang songs. By now both kids are exhausted. Leiland wasn't allowed to nap so he didn't. Owen had a short nap. And then it was way past bedtime. They finally arrive about 9pm. HOLY COW. It takes him about 30 minutes to fully hook up Leiland to all the wires. Leiland is wearing his favorite paw patrol pajamas and has his Zyla to help him. I was really expecting him to fight because of how late it was now and how tired and feisty he had been. But Leiland surprised me like you can't imagine. He was laughing and smiling the entire time. He kept asking if he looked goofy. It was so funny. I told him yes and took a picture so he could see. Each step of the way when he thought he was done he tech would pull out something new to surprise him. More wires and pieces. So funny. He didn't seem to like the piece on his nose which looked so uncomfortable. But he did amazing. Then he climbed in bed and was set to sleep. He probably passed out within 5-10 minutes. I was amazed. Owen went right to sleep as well in a separate bed I was in. I listened to a book on cd for a bit with my headphones till I was ready to sleep. I went to bed about 10:45-11:00 and woke at 11:30 to Leiland crying. He was saying the one on his toe hurt. It was his pulse ox monitor and so the tech rushed in and moved it to his hand. He whimpered off and on for an hour or so but went back to sleep and didn't wake again.

They popped in about 5am and said it was complete. They began disconnecting him before he even woke. It was very uncomfortable for Leiland. he kept crying and fighting it. I don't blame him. They could have woke him first and give him a minute. Anyway we were able to stay till 7am or leave then. I gave Leiland the choice. He decided he wanted to snuggle in bed with me. So I set my alarm and climbed back in. After no more than 10 minutes he says he changed his mind and he just wants to go home. You got it dude. So we grabbed out stuff and walked to the car to head home. It was pretty early and I wanted to take them to breakfast. I praised Leiland so much for what an incredible job he did with the whole thing. Im so proud of my big boy. We ended up getting waffle house on the way home. I needed to waste enough time to be able to get the dog before heading all the way home. So that worked perfectly. They told me it would take 2-3 weeks to hear back from the Dr about the sleep study. So we carry on and wait.

On July 26th I got a call while still asleep. I woke, didn't recognize the number, and let it go to voicemail. The kids were watching a show in my bed and it rang again. I decided to answer it but it was not the same number. This time it was the dr. They called with the results form the sleep study. Leiland does indeed have sleep apnea. The protocol is to have his tonsils and adenoids removed. They offered to send me to their ENT and I was fine with that. Then while talking with a friend whose son has had this surgery she suggested her dr here in town. I decided to call and got him an appointment for the 28th. An amazing woman I spoke with even was able to get his sleep study to the dr on less than a days notice. So we went to this ENT. Again my kids were crazy at the appointment. The dr looks him over and talks about the risks of the surgery. Blood loss is the biggest risk and at his age his is in the lowest risk group. He also said in 9/10 patients this is enough to fix the problem. While he was out I was looking at a sheet they had and I asked the dr where his tonsils were according to the picture. (I will include below). He said he's between a 2-3 - not significant but not nothing. I had always felt that with me discussing this with so many dr's and them looking in his mouth at every single appointment if his tonsils were abnormally large that someone would have connected the dots. Now his are not severely enlarged by any means - they could be much more restrictive but they are still an issue.

So now we have surgery scheduled. School starts August 8th and that was the first available date. I knew this was going to interfere with school but I really don't want him to completely miss the first day. So we scheduled it for August 10th. The way school works is the first week after the first day they only go on one day for testing. So he is supposed to be out of school for a week. Well he may have to be put on the last possible day for testing but this way he misses the least amount of school. He will have to be on soft foods for up to a week and full recovery takes up to 2 weeks. 

I'm nervous - not gonna lie. But I know it will be ok. Praying this is what he needs to finally get the restful sleep he desperately needs. In my heart I knew something wasn't right. I knew he shouldn't be so tired. As far as the adenoids I have heard plenty that kids who get sick often (usually ear infections) can benefit from having them removed. So I am hopeful that maybe this will also help him with how he is always getting sick. 

Answers - I do so much better when I have answers. I need information and to know whats going on. Its just who I am at the core. I can't help it. I am glad I kept fighting for answers. The one dr that believed it was sleep apnea told me they don't do sleep studies on children and that to diagnose they just had to follow that protocol and if those didn't fix the issue then they removed the tonsils. Im glad to have concrete answers. 

So now we have a surgery date. We need to repeat the sleep study after 3 months. Im not thrilled to have to do that again, but it is what it is. At least Tim will be home and he will have to go with Leiland for it this time around. 

Lastly here are a few pictures from the whole sleep study ordeal lol. 


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