Jul 10, 2008

Bad, Awful, Horrible!

Let's see, where do I start?? Cole had his follow up sleep study last night to his tonsil and adenoid surgery he had back in April. He had some mild sleep apnea and our ENT thought that having his T&A removed would help with the obstruction. We are trying to avoid a CPAP machine, which is an oxygen mask on him at night.
We were sent to a really cute pediatric sleep institute this time that was closer to home. The last time it was in a hospital wing for sleep disorders. We walk into the room and it's decorated with lots of stuffed animals and a cute little chalkboard that says "welcome Cole." I'm sure what they meant was "leave and never come back Cole!" I was staying the night, but Brooks came to help get Cole situated and to hang out with me in the parents lounge until I was ready to go to sleep. It was such a struggle to get him hooked up to every monitor. He was scrrrreaaming bloody murder. It took all 3 of us to hold him down. I was expecting this because he did it last time, but last time he calmed down and played for a bit and then fell asleep. OK, so we get him all hooked up...btw...how do they expect anyone to get an accurate night sleep in these places? Having electrodes all over your head, face and body, 2 belts across your tummy and eye, nose and ear monitors on you and more?!? Ya, right! I know I would have a hard time. So, after Cole is hooked up, we place him in his crib and he falls right asleep. He had completely tuckered himself out! He slept for about an hour and a half before he woke up. Not sure what woke him up, but he cried for a couple minutes and then went back to sleep. I went to bed shortly after that. There was a beeping noise on his heart rate monitor and I asked them to turn it down. The technician came in the room and turned it down, but instead of just leaving and waiting until he was in a deeper sleep she decided to turn ON the light next to him and hook up some more electrodes that he needed. The other facility waited until he was in a deep sleep and quietly hooked him up to last ones without waking him. Oh, this about sent him sideways. You would have thought someone was hurting him and by this time he was so exhausted and all he wanted to do was sleep. None of the electrodes would stay on him because he was in such a state that he wouldn't stop crying...now I don't mean just a little cry...I mean a this-is-the-end-of-the-world cry! He was sweating and hot and sticky! Everything just kept sliding off his body. Back to the other place...they must have used a better solution because NOTHING came off of Cole, even with all of his sweating. I ended up having to sit up with pillows propped behind me with him draped across me to get him to sleep. If you know Cole, then you know that this child DOES NOT sleep on you. He will wiggle his way away..not a cuddly boy at all. I tried putting him down after he had slept on me for a while, but he woke up right away and was trying to claw his way out of the crib and was once again in hysterics. I decided just to hold him the rest of the night..so much for sleep for me, but it wasn't about me. Around 1 am the technician came in and said that all of the important sensors had fallen off of him throughout the night and that they were going to end the sleep study without an accurate study. GREAT! All of this was in vain! For the hour and a half of sleep that he did get they said that there were no episodes...OK, but does that mean anything? Now, I just have to wait for the doctor to call me and let me know what is next. I mean seriously I am not putting him through that again. I was in tears after he had finally calmed down and fell asleep on me. I was sitting in the dark just crying. I hated having to put him through this. Brooks admitted that he almost cried while they were hooking him up. It's such an awful feeling to see your child like that and there wasn't anything I could do for him, but hold him down and let them finish their torture! Ugghh! This just brings me back to the point that it's not fair that Cole has to go through all of these tests and procedures and surgeries. He's only 11 months old and has seen more doctors in his short life than I have in my entire life! I'm trying not to feel sorry for myself or for Cole right now, but it's hard not to after having no sleep and watching someone "hurt" your baby. I'll let you know what comes next...thanks for letting me vent, now it's time to go get all of this nasty stuff out of Cole's hair! That should be fun...



This picture was taken at his last sleep study just to give you an idea of what it looks like to have a sleep study done. Under the gauz is about 5 more monitors and then there are some under his clothes and on his toe. I didn't get a picture of him last night because it took 3 of us to hold him down!

16 sweet comments:

Amanda said...

Oh poor baby Cole! He so does not deserve that! I think last night must have been a bad night for mothers every where because for some strange reason my always-sleeps-through-the-night baby did not want to sleep. She woke up at 11:30 and didn't go back to sleep for more than 10 minutes until 5! and like Cole she was throwing her self into a tizzy! but unlike Cole, she had no good reason! I was sitting in the dark crying with you, girl...so weird...
Yeah, I never understood the point of sleep studies because I just cant see how anyone can sleep all hooked up like that...and a baby? C'mon! I cant believe that they cancelled the study on you after what he went through. There's gotta be someone you can complain to, because that's ridiculous! Poor poor Cole. I will be praying that the doctor takes what sleep Cole did get as sufficient and gives him a clean bill of health.

Alex said...

I'm sorry to read you guys had a rough night. You have to remember that you are doing all this for his own good and you are a good mom! I know it's unfair to have to put our babies through so much but at least they are getting good medical care which is so important for them!
Hang in there. :)
By the way, how old was Cole for his first sleep study? I am wondering when I'm going to have to do this.

Caden's Story said...

Katie!
I'm sorry the study ended this way ... knowing you will more than likely have to repeat it. I can't imagine the little sleep he got can give them an adequate study! I'm not sure how when the sleep study is successful these little buddies can sleep with all the wires and sensors on them?!

I hear ya 100% on watching your baby be so upset. These last couple days I keep thinking about the trauma Caden went through on Monday & Tuesday. It's just not fair. Hopefully all of these test and procedures will be completed by the time our little buddies are 3 or 4 and they wont remember any of this! Wishful thinking!

Good luck getting ALL of that goop out of Coles hair. That was so impossible after Caden's last sleep study! Especially since we were staying at my husbands friends house who is a bachelor ... so he didn't have any of the health & beauty aids to help get that crap out of Caden's hair.

I hope you and Cole can have a relaxing day today and just kick back!

Trisha

Kim said...

Katie,
What a horror! Poor little Cole. I know exactly where you are coming from-I feel so bad sometimes that Preston knows his ENT's name! He is friggin 2! It is totally unfair at times. I just try to think that there are other children who are much worse off and my heart breaks even more for them and their mothers.
You are a great mommy to him. Never forget that. He loves you so much.
Hugs, Kim

Aunt Jen said...

Katie and Brooks,

I know how horrible it feels to watch them scream, kick and cry when those things are being hooked up to them (let alone have to help hold them down). Brooke was hooked up for 5 days, trust me I know! Take heart and know that you are doing the best for him even if the road to "the best" sucks at times. He is soo lucky to have you both as parents. Just remember that even when he doesn't like you (or what you have to do) he will always love you. Babies are resilient and with his stubborn streak he'll be even more resilient than most, aren't you lucky! ;) We love you guys and are sorry to hear it was such a rough night for everyone.

Cole-I'm counting down to your birthday, I have your present and you'll never guess! :) Please give Mommy and Daddy a break today it was rough on them too!

Leann said...

Oh Katie! that's just awful!! For a pediatric sleep institute, you'd think they'd know how to make it a easier for Cole...guess not. Maybe you can go back to the hospital that you initially went to?
Hang in there! Hope Cole gets back to being his happy self soon.

Jodi said...

Poor baby and poor mommy! I'm so sorry you had to go through that.

Rob & Michelle said...

I'm sorry you 3 had to go through that! I can't imagin goingg through that... Cole is so lucky to have such a great mommy! Keep us posted.

Andrea said...

Okay--well, it looks awful, but he sure does look cute! That's got to take some of the agony away!

Hall Family said...

Poor litte Cole! Parker's sleep study was difficult too. I don't know how they expect the little guys to sleep with all of that stuff attached.

I hear you on how this is not fair. My little guy has already had 2 surgeries in 15 months, and I didn't have surgery until the day he was born.

Amanda

Anonymous said...

Hi Katie,

My name is Jill and I read your blog via Tonia's. My son, is Nick, he is almost 4 and has achondroplasia. Cole is adorable! I am generally not a "commenter" but I had to jump in. I understand your doctors wnat a foolow-up to see Cole's apnea has improved but there are natural indicators to show us if our kids apnea is better. Is Cole snoring, sleeping with his head cocked back, irritable throught the day these would be the indicators that the surgery did not help. I hate to see theses kids(and parents ) go through alllthis unecessary testing when really a parent has a pretty good idea of what is going on with their child. Nick had his tonsils and adenoids out and we never have had a sleep study. We told Dr. Pauli what his symptoms were and he said sounds like obstruction. Nick's ENT works with a lot of achon patients and never asked us for a sleep study. We also never had a follow-up study. If his symptoms come back, and they may since adenoids do grow back, will cross that bridge.

Anyway, just wanted to say there are other ways to monitor the obstructive sleep apnea besides those darn sleep studies.

Jill

Destini said...

Oh Katie, I did not need to read this today - we are scheduling Trace's first sleep study. I don't know what I am going to do, Trace is a lot stronger than Cole, and boy can he throw a fit! I hope that your doctor doesn't make you get another one.

Jennifer said...

Yow, what a story. Poor Cole and poor Mom and Dad.

Jaime said...

Katie, I'm so sorry for this horrible experience. I know exactly how this night felt for you. When Caitlyn was maybe 1 and a half, her specialists wanted a sleep study done on her. We have never had any concerns about sleep apnea with her but it was just being done as a precautionary. So all three of us went to the hospital, which we couldn't even get this until 9:00 which was 2 hours after her normal bedtime. Scott wasn't able to stay the night, same as Brooks, but he came along to help get everything situated. Well, Caty sat through getting all hooked up, but as soon as she was told it was time to go to bed, she screamed like we have never heard her scream before. After about an hour of this the technician asked why we were there, had we had any concerns? When I told her no, just that her doctors wanted one done, she decided that it would be in everyones best interest to send us home with a machine that we would use for 2 nights. All it did was attached a sensor to her toe and monitored her levels this way. Sure it didn't get everything that they needed, but they saw no signs of her stop breathing which is what we already knew, but now it was on paper for the doctors. This was our saving grace! Two nights worth and we drove the machine back and said we hope that we won't see you for quite some time!

Holly & Jon said...

POOR COLE!! But remember you are such an amazing momma and Cole knows it!!

Even hooked up to those horrible cords, he looks so darn cute!

Tonya said...

Katie, this is just another experience that will make stringer, more determined and a better mom!

Cole will walk away with the battle scars we hide.

He is special, you already know that and we would go through all of these things again to see their precious faces!

Hugs and pray is doing much better!!