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View Full Version : Sleep Study/Apnea Experts. Help me make sense.


suzanne2545
04-15-2009, 09:22 PM
Talked to a nurse today and got some preliminary info from Parker's sleep study. We won't here til next week what, if any, intervention will be suggested and to be honest with the whole breathholding issue still in limbo I think we will be waiting a little longer to make any decisions. That said, I'm hoping to hear some thoughts on this data.

Over the course of the night he had about 130 apnic events. Average of 15 per hour. They ranged from very brief to up to 13 seconds. Most were obstructive but several were central. His average sat overnight was 94. Not bad. The worst part of the night was the beginning (when I was watching and panicking) when the average was much lower - mid 80s.

Obviously the nurse we talked to couldn't say what might be coming down the road but she assured us that while he has issues he's not really in any danger at this point of heart damage or anything.

I asked her about how much the social aspects of the sleep disruption would factor into the game plan and she encouraged me to discuss this with them. I'm sure this is why Parker is such a bad sleeper and as a result, I'm not sleeping. I haven't slept more than 3 hours at a stretch since he was decannulated and often it is less than that. And I'm a girl who likes and needs her sleep!

Any ideas where we might be headed? Thoughts about the social vs medical aspects?

bradensmom
04-15-2009, 09:26 PM
Wish I had some ideas for you, but it really depends on what the sleep study showed all together. Hopefully he will not need anything, just a little more time to adjust.
Amy

FightingForFaith
04-15-2009, 10:25 PM
I can't offer you any advice (I'm still searching for my own!) but I can relate.

Faith does not sleep either. We are in the process of weaning her from the vent at night (so we can proceed w/the LTP) but she also has apneic episodes. They resolve on their own, but we are seeking to medicate her, and are afraid that this will totally knock her out and she will continue to need the vent. It's such a catch 22! It's like we are choosing between vent/trach and sleep. At this point, sleep wins.

Ok, I do realize I did not answer your question, or offer any help, I just rambled about my own life!!!! Sorry!

This might be a dumb question, but would some night time O2 (through a cannula, help?) (dumb question b/c I know from my own experience that O2 does not resolve apnea.) Or how about Bipap?

It never ends, does it? I hope you get some help soon!

Jen :)

Christamae
04-15-2009, 11:25 PM
SATs in the 80s is definitely reason for night support. For a child under 95 is considered a bit low. 130 breathholding episodes is a lot. Keep in mind that this was a foreign environment and uncomfortable equipment so it is likely he is worse at home.

These spells can cause strain on the heart. I always had headaches and nightmares. My first test when I was 9 was about the same as Parker. The one common theme is that he won't feel rested.

I suggest doing a bi-pap with an oral interface.

llwilliams8
04-15-2009, 11:33 PM
Hmmm...not really sure what to tell you but what goes on with Autumn. She does not have that many desats in an hour but she is on a vent 24/7. Every night is different with her. Some nights she needs oxygen and others she does not. She has a shunt though as well so when her shunt is draining well she needs less or no oxygen but sometimes her shunt drains a little slower because of constipation and then she will require more oxygen. Oxygen works for us with her episodes and keeps her O2 levels above 92. She sleeps well though at night and sleeps ALL night long so we don't have that problem but I guess that is because she is on the vent so when she desats it is still breathing for her and does not disturb her. Sorry I'm not much help but I guess they may send you to see a neurologist depending on the results and to see what steps need to be taken next. Thinking of you and hoping you get answers soon.

JWorthington
04-16-2009, 05:40 AM
sorry Suzanne, not something we deal with here, so can't offer any advice. Just wanted to send some hugs :hug: :hug: :hug:

Julie x

scm
04-16-2009, 07:01 AM
Hey Suzanne,

It must be hard to digest with only half the info. The work of breathing you were describing earlier is probably due to the obstructive apnea episodes and CPAP would definitley take care of that problem. I think to a degree CPAP/BiPAP can also address central apnea issues, but I don't know much about that. I'm sure some type of support while sleeping will be suggested as a first option.

As far as the social vs. medical - not sure what you mean by social? But you guys need your sleep!:) Sleep deprivation takes it's toll, and we've struggled with that too for months following decann. Getting some answers might fix the issue so you guys acutally get some rest.

Have they scoped Parker's supraglottic area since decann to try and visualize any obstruction? Is this just an issue when he sleeps?

Good luck:hug:

KJKK8437
04-16-2009, 09:28 AM
Suzanne -- my sister just had a sleep study for her daughter, and she is going through many of the same issues. The child has currently undiagnosed intermittent obstructive apnea, and they are going through the process of trying to figure out what their options are. She is a little bit older than Parker. Like Parker, sleeping has become an issue.

The right doctors have not yet weighed in (old ENT was a jerk, new one on the way), but the options that will be explored (as more information is gathered), is temporary CPAP, a partial adenoidectomy, tonsillectomy, better nasal/sinus secretion management, and possibly some other surgeries that are not relevant to Parker. Anyway, they are still looking, but they are thinking that in her case, there are a lot of little things that are contributing to a reduced airway, and one of them has become a bit out of control. No one answer will probably suffice to "fix" her, but working with all of the contributing factors will help. A bronch is almost certainly in her future to help diagnose all the factors. I have a hunch that there is a flap in her trachea, but that is only my gut feeling.

I know this is of no use to you, except that I thought it might make a little bit of difference to know that this can happen to kids who have never had trachs at all. If it were Alex, I'd be thinking the worst, and I hope this keeps you from going there.

cherienz
04-16-2009, 10:17 AM
Sorry can't offer any great advice on post decan. Was Parkers history trache with oxygen/ or ventilation? Sorry, I shoud read up the history..

Can his nighttime/sleeptime be helped with CPAp/ or ViPap via Mask?? Sounds like more than 02 issues with the apnoea episodes.

What are your respiratory/ENT docs thoughts?? Is he coping well daytime, but having the sleep episodes?

Cherie

suzanne2545
04-16-2009, 10:45 AM
Sorry can't offer any great advice on post decan. Was Parkers history trache with oxygen/ or ventilation? Sorry, I shoud read up the history..

Can his nighttime/sleeptime be helped with CPAp/ or ViPap via Mask?? Sounds like more than 02 issues with the apnoea episodes.

What are your respiratory/ENT docs thoughts?? Is he coping well daytime, but having the sleep episodes?

Cherie

Thanks for all the thoughts. I'm trying to make sense of the numbers before we hear back from ENT.

Parker was trached only. No O2 or vent ever.

CPAP has been mentioned definitely. I'm sure it is one of the options that will be weighed here shortly when ENT sees the sleep study results. His ENT is out of town until Monday.

They've also tossed out the idea of a tonsillectomy and/or lasering the aretynoids. He's still got some floppiness at the back of his trachea as well that is factoring in.

His daytime it utterly uneffected. He has NO breathing issues at all during the day and seemingly has an unlimited amount of energy to keep up with his big brothers. I'm actually a little scared to see what a Parker with a full nights sleep looks like! LOL.

Mostly, I want him to be comfortable and safe and for me to get a good night's sleep now and again. Tall order, I'm sure.

TommysDad
04-16-2009, 11:06 AM
Just saw this post. 130 episodes! YIKES! And doesn't if figure your doc is out until Monday! Sounds like our kind of luck! Let's just hope something simple liek C-PAP at night will work wonders. That way you can get some much needed rest to keep up with the well-rested Parker:D

~Maggie

Ainsley's Mom
04-16-2009, 08:49 PM
It's hard to rest easy with numbers like that and incomplete information. If I were you I'd probably be unsuccessfully trying not to worry. Try to keep yourself busy over the weekend so you don't have too much time to think about it. Hopefully the doctors will have some good ideas that can be implemented quickly and you'll be getting plenty of uninterrupted sleep in no time. :hug:

Hope
04-16-2009, 10:56 PM
Susan took my thoughts right out of my head ... goodness, such worrisome numbers and incomplete info AND no doc to help process all this. I can't imagine dealing with all this and getting little sleep for all this time. You need answers and a plan, hopefully this is just around the corner. Man, I hope you can all start getting some sleep soon!

:hug:
Hope

suzanne2545
04-16-2009, 11:03 PM
It's hard to rest easy with numbers like that and incomplete information. If I were you I'd probably be unsuccessfully trying not to worry. Try to keep yourself busy over the weekend so you don't have too much time to think about it. Hopefully the doctors will have some good ideas that can be implemented quickly and you'll be getting plenty of uninterrupted sleep in no time. :hug:

Susan took my thoughts right out of my head ... goodness, such worrisome numbers and incomplete info AND no doc to help process all this. I can't imagine dealing with all this and getting little sleep for all this time. You need answers and a plan, hopefully this is just around the corner. Man, I hope you can all start getting some sleep soon!

:hug:
Hope

You girls are so cute. I'm actually worrying very little about the sleep aspect. I figure we've lived with it this long, what's another week. I mostly just wanted to get some advance understanding of what the numbers mean. My MIL was put on CPAP a year ago and she averaged 10 obstructive apneas an hour. That was pretty telling to me.

Monday will get here before I know it. I'm more worried about waiting to get a pulmonology consult on the cyanotic episodes. But the sun is shining here and warmth has arrived so I'm just enjoying spring time and the emergence of my garden.

faywrayy
04-17-2009, 08:27 AM
Suzanne, I guess there's no sense in worrying for a few more days! Things will get figured out -- they have to. And hopefully Parker will be on his way to being a well rested toddler!

As an aside, I have a little friend who was decannulated this past fall, and he is on cpap now, after having nothing since decann. His issues are different (he has PRS, like Kate and his tongue is still obstructing), but that's what they're doing for him. And ENT was out of this decision -- he is in pulmonary's hands now.

Jonahsmom
04-17-2009, 09:13 AM
We are dealing with some of those same issues. My son has Down syndrome, so the overall anatomy/floppiness is different from Parker's....

The big things they look at (in Cincinnati where Jonah goes anyway) is how low does he desat during the apneas? If it's down in the 80's you can bet intervention is on the way....too much risk of damage to the heart and lungs, as well as brain tissue. Getting a good night's sleep (so mom can too) is somewhere lower on the list of things they address... :D

Jonah has had several surgeries to address this issue, including T&A, lingual tonsillectomy, tongue reduction, and supraglottoplasty. CPAP is not an option that Jonah can understand right now....he just doesn't understand and fights it. So we just repeated his sleep study this week, and found that with a bit of oxygen, he keeps his sats up higher, both baseline and while he's having obstructive events. Not the perfect solution....but for now, we are keeping the sats up, and trying really, really hard not to have to re-trach him. Possibly Parker could use 02 until he's old enough to understand the need for CPAP? But with that many events, and his sats dropping into the 80's, I'm gonna bet they want to do something....

Hope this helps!

Anji

Ainsley's Mom
04-17-2009, 02:51 PM
You girls are so cute. I'm actually worrying very little about the sleep aspect. I figure we've lived with it this long, what's another week. I mostly just wanted to get some advance understanding of what the numbers mean. My MIL was put on CPAP a year ago and she averaged 10 obstructive apneas an hour. That was pretty telling to me.

Monday will get here before I know it. I'm more worried about waiting to get a pulmonology consult on the cyanotic episodes. But the sun is shining here and warmth has arrived so I'm just enjoying spring time and the emergence of my garden.

I didn't really mean that I hoped they figured out a solution so you can get some sleep. Just that those numbers seem to indicate a serious problem and I'm sure you want to find out what it means and how they will treat him. Finally getting some uninterrupted sleep is just a bonus that I'm sure you will appreciate.

I'm glad you're able to put it out of your head and enjoy the spring. I'll be looking forward to hearing what they say next week. Do let us know.