I am so far behind- Catch up to commence! Let's start with sleep!

Sleep. It has been a dreaded time in our home for 20 months- but for me personally, nearly 2.5 years. It has taken it's toll on Dan and I- but I am happy to report- Cameron finally sleeps. Not well- but he does.
I finally just decided to not care how much trouble I got in with Dan, and let Cameron "cry it out". Now- I didn't just leave him in his room screaming. He does still have reflux- well managed at this point- and central apnea.
I proceeded gradually. I sat in his room with him for a couple nights- literally like 2- while he went to sleep. It was long- like just over an hour the first night, and 45 minutes the second, but by night 3, he was ready to go in his bed, and I left the room!
Now- he ASKS to go to bed! It's all or nothing- he won't cuddle a single bit anymore. Wants to get right into his bed. It's bittersweet. He really isn't much a baby anymore!
He still wakes up multiple times a night- I can hear him- but he doesn't scream from tummy pain or being scared, he simply rocks himself- yes. rocks himself in his bed, back to sleep or plays for a minute then goes back to sleep.
Needless to say, we are all quite a lot happier around here. Now, to just train myself to get some rest!!

No more awful screaming nights!! Had to photo document- some day it might come in handy.

Lot's more smiles and play instead!!!! 

He is my child- he LOVES BLANKETS. Specifically the muslin cotton Aden and Anais ones. I love blankets too- though he sucks on the tags. I never did that. 

Babbling cuss words

Everytime Cameron seems to get into a decent sleep groove, if we mention it or someone asks- it all goes down hill. He was making great strides in his sleep but lately he has been getting up every 3-4 hours again instead of every 5-7.
Last night was exceptionally difficult- from 2:30am on was a screaming, mad, baby babble and baby cuss words, on and off the rest of the morning! ROUGH! I couldn't figure out why- but after our morning was about done and we did lunch, he was ready for his nap and had a better rest of his day!

Have you ever seen such a face?! This guy has it rough!

We saw the Gastroenterologist

I took Cam to see the GI specialist for his reflux. We have been waiting a month for this appointment- we have to get this under control before we can really address his sleep apnea and poor sleep behavior.

With Cameron's reflux, he has also always tended to be gassy and constipated. This unfortunately causes his reflux to worsen- the Doctor said- well yes because if the drain is clogged, where does the stuff go? Good point!

I used to keep him pretty regular just by giving him prune juice everyday, but that got to the point where it didn't help. We were told to start using miralax, it is safe every day. Well, even then, I just couldn't get him regular.

When the doctor was examining him, she noted that he acts like his stomach is very tender and hurting. I told her yes, he always has problems with gas and alternating soft bowel movements and hard ones.

We went over his diet, and she concluded that he is getting way too much fluids, which he wants because reflux kids compensate with fluids to put the heartburn fire out. It helps momentarily but he is getting so much fluid that he has issues regurgitating it back up.
She also concluded that he is getting way too much dairy- which contributes to the constipation.

So now, what do we do with these awful digestive issues?

The plan:

- reduce all fluids to a max of 36 oz a day.
- do a bowel program- to clean him all the way out and then regulate him.
- dairy free for at least 2 weeks.
- add a new medicine to night time- a special medicine that relaxes the entire digestive system and surrounding muscles

The GI doctor feels like this will be a big step in the right direction, and that if we can get him regulated and then give him time to adjust and feel regular, his sleep will come.

We have switched Cam to almond milk and cut out cheese, yogurt, and cottage cheese. That has proved difficult- dairy is a favorite staple in this household and relatively healthy in the forms we use regularly!!
I haven't started the bowel program- I am not too excited about giving him diarrhea on purpose.

Now though, we continue forward with this and see how it goes. We are to follow up with GI in 4 months, then follow up with sleep docs after that.

Crossing our fingers and saying our prayers that getting this digestive system regulated will help his central apnea and help him be more comfortable at night!

In the meantime,
this cute boy is just growing by leaps and bounds and it is so enjoyable to watch him delight in new discoveries every day! He is going through a very silly phase right now and cracks himself up!!

Mr. Mischief!!

So so smart. He loves playing on the computer already! I do have some apps on my laptop and phone for him- I would much rather him grow with the technology and be savvy so that he is smart about it and learns to keep away from the possible dangers.

MRI

Today was Cameron's brain MRI. We had to check into the hospital at 6:30 this morning and we got home about 10:00. 

I was so worried, and so scared, and I know Dan was worried too. Thankfully, Dan and Dad gave Cameron and myself a blessing last weekend, and Dad gave Dan one too. It made this horribly long and difficult week easier to bear. 

Being told there is a possibility that something is wrong with your child's brain is a terrible thing. Knowing he stops breathing at night is a terrible thing. I don't know why he has had a rough first year, but I do know things happen for a reason. 

The MRI itself wasn't the scary part. Waiting for results and the preparation for the MRI were. Because the machine is so loud, and so closed in, and because you have to hold completely and perfectly still for an MRI, they had to put Cam under general anesthesia. 

He couldn't have anything to eat or drink, and he is recovering from a bit of a viral infection, so last night he was miserable. His reflux was worse because there was nothing we could give him to fill his stomach and calm it down. I didn't get any sleep, Dan got only a couple hours. I couldn't put him down because he was so upset from not feeling his best and from being hungry and thirsty. When we all got home from the hospital today, we all crashed. I haven't slept that hard and deep for over a year. It was only a 3 hour nap, but definitely better than nothing! 

For the anesthesia, they just used gas to knock him out. They let me hold him while they did it, and he was not happy about the mask. It was one of the longest minutes of my life waiting for the gas to work while he was upset. Once he was out, I almost lost it because I could just feel him go limp. It was so scary. Our anesthesiologist was so nice, and so good, with a high reputation at Primary Children's and he made me so much more at ease. I told him that it has never been without a fight that I could put him down. 

His MRI took about 40 minutes, and then we got to go to recovery while he woke up. That anesthesia sure did make for a groggy and grumpy day!

Here he is while we were meeting with the nurse practitioner for a final health exam for the procedure and with the anesthesiologist. 

We are becoming way too familiar with doctor's offices, and Cam really loves the stools. 

Here is my sweet boy just after he got knocked out! 

Crashed! Thank heavens for rest and cuddles!

I was thinking that we would have to wait a few days at least to hear about the results, but Dr. Tan's nurse called me this evening and went over the results with me. 

YAY for a normal brain! So relieved!!!! 

Dr. Tan said now that we can cross off the serious brain possibilities, and his tonsil and adenoids, we can now pinpoint that his issues with sleep are from his reflux. It has never been under great control, and now after meeting with the specialists, we found out that the reflux can actually cause the central sleep apnea. The plan for now is to see gastroenterology specialists to get his reflux resolved/managed, then work on his sleep from there!

I am so so grateful for prayer, for family and friends, and for all the love, concern, support, and prayers we have felt this week. It has been rough and we aren't in the all clear yet but we are getting answers, and answers with managable treatment options! 

The ENT verdict

Cameron saw the ENT today. She put a scope in his nose to check his adenoids and checked his tonsils. She said that they were mildly enlarged, but not enough to do surgery. She explained that at his age the surgery would be difficult, and that based on the sleep study showing that there is no obstruction, but rather a central brain pause, there was no need to do surgery at this time. I am so grateful for that. She said that definitely to move forward with the MRI- they will look at why his brain pauses. She said that sometimes babies are born with a dysfunction or abnormality that doesn't affect cognition, IQ, motor development, but will affect more primal functions- breathing/sleeping, etc. Without going into tons of detail especially since it isn't her specialty, she told us this about what could be going on with Cam, and that the scan will look for this. She said there are many possibilities.
She also said based on our visit that it sounds like we need to be more aggressive about his reflux treatment and definitely get him in to the GI docs. Their wait list is long, but hopefully they will call us with a sooner appointment if someone cancels.

In the meantime, Cameron is going through a stage where he drinks and eats things- just so he can spit them out. Gross. But true to little boys and toddlers, he finds it a funny game!

Jaxson is so cute with Cam, and Cam loves Jaxson. Jax is always patting his cheeks and kissing his head. He always wants to hold Cameron, but it won't be too long until Cam catches up in weight! Jax is a light weight!

Difficult answers

Okay. Here it is. Here are our answers- well here's our plan to get answers...

Cameron has to see a gastroenterologist for his choking and reflux to make sure that isn't why he has trouble sleeping. That appointment is booked clear in May, but he is on a cancel list.

He has to see ENT to get his tonsils out. They are touching and most likely the specialist feels they are inflamed due to his reflux. His surgery consult is this Wednesday. 

His sleep test came back that he does not have obstructive sleep apnea, but his brain stops breathing. He had 2 long apnea events 5 and 7 seconds, and 37 other central brain pauses that made him stop breathing. 

He has to have a brain MRI Friday. They will have to put him under general anesthesia to perform the test. 

Dan and I are very worried and spent a large portion of our weekend just digesting all this information. 

I knew all this time something was wrong. 

We can now only exercise faith and prayer that the best case scenario comes out of all this. Dan and Grandpa have Cam a blessing and then he gave Dan one and Dan gave me one. Those prayers helped ease some of my worry and I know that my Father in Heaven is watching over my family. We would greatly appreciate all your prayers too!!

Sleep Study

All my medical training, experience, and technical knowledge of what was going to happen just could not prepare me for the trauma it would cause my own son.
It was so upsetting to watch him get so upset and not understand why he was being tied down and hooked up.
I just about lost it, but I was able to hold my cool long enough for him to be hooked up and fall asleep.
Dan came home and was so upset about it that he couldn't sleep.
I was really stressed out about this because I knew that they would need 4-6 hours to analyze findings- but I was set at ease slightly when we arrived and I found out it didn't have to be 4-6 hours straight, just 4-6 hours total.
Well, it was a really rough night. Cameron fell asleep around 9:30- but slept really fitfully and restlessly until 12:30- he had woke up 3 times, and then I finally gave him some warm milk at 12:30am, and he was out! He finally fell into a good sleep pattern from then through 3:30- the respiratory tech over his study had to come in because one of his leads was unhooked, and she couldn't find where- unfortunately looking woke him up- and the frustration for her, Cam, and I, was that it wasn't even unhooked on him, but on the machine and he didn't need to be disturbed. How would she know without checking though?
Anyway, I tried for a long time to get him back to sleep, and I succeeded, until I put him back in the crib, then he just would not sleep, only play. We gave it a good effort, and decided to just unhook him an hour and a half early.
I think they got 4-5 hours, it will be cutting it close. Amber- our tech- I really liked her- said that if they didn't get enough hours, they will let us know and try to reschedule for as soon as possible, otherwise we will follow up with the sleep specialist in about 2 weeks.

After much deliberation, tears shed by all 3 of us over all the trauma that was this study, we won't repeat it. So I really hope and pray they got the info they need to help my son!

Here he is getting hooked all up!

All upset, but done and ready for bed-

While sleeping-

All done and unhooked- his poor skin reacted to the adhesive.

On the car ride back home, Amber our tech sent him home with a monkey blanket souvenir.

We saw the sleep specialist

Oh how I am grateful for prayer and modern medicine. We originally had an appointment March 5, but I called yesterday to see about insurances because of obamacare and they had a cancellation for today! Dan and I were both extremely impressed with the sleep specialist. He spent over an hour discussing sleep issues with us and answering questions and examining Cameron.
The verdict:
After listening and asking some questions, he said that he never gaurantees he's 100% right before testing, but that it is most likely- 85% chance Cameron has sleep apnea. He believes this because:
- Cameron frequently wakes up screaming, but will fall right back asleep if he is held on your shoulder/upright.
- Cameron gasps for air a lot in his sleep and gurgles- we thought it was reflux but not likely.
- Cameron lightly snores sometimes
- Cameron is cranky and drowsy all day
- Family history of sleep apnea
- When he examined Cameron, he found that Cameron has almost no airway- his tonsils are huge and his oxygen level was slightly low.
The solution:
We are getting set up to do a formal sleep study. When we have the results back, we will see the doctor again and go over them. If the sleep apnea is confirmed, he will get scheduled for surgery to have his tonsils and adenoids removed to open his airway, then we will let him recover and retry sleep training.
If the results surprise the doctor and us, we will make sure that there isn't another medical reason, and proceed with behavioral therapy for insomnia.
The specialist is pretty sure it will be sleep apnea though. I am so grateful to have some answers and to be getting something done about this.
I just knew that something wasn't quite right!

The pediatrician's verdict….

Well- the good news is that we have it narrowed down to 3 possibilities. The bad news, we have 3 possibilities!

1. A terrible, nasty, awful habit from dealing with reflux that has since resolved, and he happens to just be super stubborn. Super stubborn.

2. Silent reflux- he still could have reflux, but he doesn't spit up much anymore- so basically heartburn bothering him.

3. A sleeping disorder. YIKES!

At this point, the pediatrician wants to make sure it isn't a medical problem that needs intervention- #2 or #3.
We have a referral to see a sleep specialist- I currently keep playing phone tag with the specialist's nurse to get him scheduled.

Dan and I kind of lean toward #2- Sometimes he still has issues in the day with it.
I am definitely going to keep posted about the progress and hopefully we can get some answers. In the meantime, Cameron is cute as ever- and we are doing our best to get by!!

We are headed to the doctor

So… We have literally tried everything- from hippy/holistic remedies to towing the line to what the doctor has said in past appointments and everything in between. I am serious- by trying I mean 2-3 weeks of disciplined efforts, with absolutely no progress. Cameron has no issues falling asleep. We've pin pointed the trouble to staying asleep. He wakes up almost every hour, almost every night. A good night is 3 wakings or less. I have been exercising to lose weight and with the lack of sleep, my progress is slow.
He doesn't eat, and only sometimes drinks a little milk in the night. He is old enough and weighs enough that he should stay asleep.
There are only 2 things we haven't tried- co-sleeping in our bed, and the old old trick- whiskey. I don't think either will make a difference since falling asleep isn't this issue at hand.
Dan and I are starting to wonder if poor Cam has a sleeping disorder. We are both actually starting to worry that he may have sleep apnea. We have a doctor appointment with his doc in 1 week. In the meantime, I camp out in his room while he puts himself to sleep.

Hooray for Sleep!

HOORAY- No really, Hooray!! After 4 really long nights of our plan, Cameron slept through the night last night. I mean really slept! From 8:30 last night, to 8 am this morning!!! He didn't wake once!! I am planning to have a few upsets along the way, but I am so glad that he is sleeping! In turn, his eating and napping has improved dramatically!!! Not that he was starving, but he doesn't just snack anymore, he actually eats a meal! I kept waking up last night- I am so used to waking up for him- but hopefully we will all start getting much, much better sleep!!! My baby is a good, good baby. We love him.