Can we really do nothing more for her sleep apnea?

[myangelsaliandsadi]

Ali already had her tonsils and adenoids removed, CPAP was a total disaster. We are going to do Occupational Therapy to see if we can get her over her wind blowing sensory issues, but in the meantime you can't even turn the air on in the car, much less get the CPAP near her. We tried sedating her even and putting it on then, it didn't do any good. We see the Pulmonologist again on the 10th.

In the meantime I feel helpless.

I have been letting my girls sleep in their Boulevards (carseats) because they have been VERY sick. Pictures here: upwithdownsutah.blogspot.com/

When laying down they required oxygen, (SAT's well below 85) when sleeping upright in the Boulevards they did not (SAT's above 85). Sleeping in the seats kept them out of the hospital, and they were more comfortable. Peanut has gotten better and moved back to her room. Although she is NOT happy about it, I'm more than willing to deal with the crankiness of adjusting. Tonight she is sleeping in the Boulevard in her room, (provided that she GOES to sleep, she wants the rocking chair again!) because her saturations dropped again but tomorrow I think she will probably be okay to lay down. We'll have to see.


Ali however got worse so she is in the Boulevard Rocking Chair.... her SAT's are also low (85-89) but still not requiring oxygen. She also has sleep apnea so her SAT's run low while she is sleeping anyway. It's been a while since I checked them while she was sleeping. However they normally are between 80 and 87 while she is sleeping...they are better than that now and she is sick, so I can't help but wonder if the Boulevard is helping. She usually wakes up 11-12 times an hour because she quits breathing, and I haven't heard her wake up at all in the last 3 hours!

Once she recovers I plan to compare her SAT's in the Boulevard vs her SAT's laying down. IF there is a difference I might consider letting her sleep in the Boulevard permanately. (The seat goes to 65lbs)

My question is....is there anyone out there that would do this? At this time we have reached a point where we can not do anything more to treat her sleep apnea. We have tried all reasonable options and they didn't work or she wouldn't use them. The thought of the damage that the oxygen deprivation will do to her heart and lungs is horrible.... so if sleeping in the carseat would help I will do it. Obviously it's not ideal, but it's probably our best/only option.

I'd probably keep it on the rocking chair and put it in her room instead of her crib. And just let her sleep in that. I do plan to start monitoring her oxygen saturations regularly to get an idea of whether or not it will do any good, and we see the Pulmonologist again on the 10th, but I am interested in opinions.

If your child got 75% of the required oxygen while laying down and got 85% while in the carseat would you let them sleep there? (Anything below 85% should mean oxygen.)

This is made even more critical by the fact that Ali's apnea episodes are lasting longer. One of the reasons that she is going to be hooked to the SAT monitor from now on. Usually if I find her not breathing I can just touch her back and she takes a deep breath. Lately I have had to almost wake her fully to get her to start again.

The thought that I might one day go in and be too late is horrifying... I don't want to be missing something I could be doing to help this.

We've tried removing tonsils and adenoids, sleep study was identical afterwards to the one done before.
CPAP
Oxygen
Somnoplasty is not an option much to my dismay
Vapotherm is not a likely option
Obviously a tongue reduction is highly unlikely

And I don't think we have any other options.

Thanks in advance...

[hannahph]

You know for now I would let them sleep in their carseats. You need to get some sleep yourself to stay strong for them and if you know they do better there- well it seems logical to me. I would really discuss this with the DR. Maybe having a hospital bed for Ali would help so you can elevate the head of the bed. I don't know but there has to be some way to help you. It seems like there hasto be someone else who has been in your situation and some way to help these little ones. I know you must be so frustrated. Please know we are thinking of you. Keep us updated when you can.

[Emilysmom]

Chelsae,
It sure sounds like you've exhausted every possible option and have done tons of research on this. And yes........I'd let my child sleep in her car seat for as long as it took to find answers; or forever if it was the only way she could sleep. The car seats may only be an option till Ali is 65 lbs, but at that point she could probably sleep in a recliner or rocker without the restraint of the car seat. I have patients who have slept at home in their recliners for many years because it is the only way they can breathe, and to sleep comfortably. So, when they enter the nursing home and we try to get them to sleep in a bed, it's traumatic for them! At that point, their family brings in the recliner from home and they are again able to sleep. I know my experience with CPAP is with elderly adults, rather than children, but we have many patients who simply can not tolerate the face mask for their CPAP........they literally have a panic attack and can not sleep with it at all. One woman was recently started on a medication at bedtime to relax her (she would totally freak out if we attempted to put the mask on), and it has been amazing how well she has tolerated the CPAP after that. I'm not sure if that would be an option for Ali? Maybe not, since you mentioned that you sedated her and that did not work. It has to be SO hard to know your child needs something and to have such a hard time providing it because they just can't tolerate it!! We have a woman in our nursing home who has Down syndrome and uses CPAP at night.............her family told us she had an incredibly hard time tolerating it at first (she has significant sensory issues), but now realizes how much better she feels with it.

So, I guess I'm just saying that maybe the sleeping arrangement you have worked out now is the absolute best for the girls..........and when they get older, they might be better able to understand and/or tolerate the therapy. (And in the meantime, the OT for sensory integration therapy may have made a big difference)

Also, I keep seeing advertisements......just saw one at the mall yesterday......with a photo of a person with a CPAP face mask on and a statement about a "new and improved" type of therapy that does not involve that cumbersome mask. I didn't stop long enough to read all the info, but it does seem that there should be a better method! Does anyone know what this is all about?


Let us know how the visit with the pulmonologist goes on the 10th!!

Susan

[myangelsaliandsadi]

Yep we tried the medication to relax her, and it did nothing. I was very hopeful that if we could just get her to keep it on for an hour she would see how much better it made her feel. However, we can't even get it ON her in the first place. I only am considering doing this for Ali, unless we verify that Peanut also has sleep apnea. Peanut GOING to sleep is the problem, she doesn't normal have too big of a problem staying asleep. I do not want to get her into the habit of sleeping in that carseat because last night was already a disaster trying to get her to sleep in the seat in her room instead of the living room. Change is not her favorite part of life, so getting into that habit would be a disaster.

I'm not as worried about Ali making it a habit though, and if we found a way to treat the OSA, we could move her back to a bed. There is also another carseat that goes up to 105 lbs (not that the weight limit really apply in the house!) so I'm not worried about that. I'm pretty sure we could have one for her to sleep in for a very long time if needed.

I think the new and improved CPAP you talk about might be Vapotherm. It is the only thing I have heard of, so if there is something else let me know please!

vtherm.com/

Thank you....

[Kristen]

I say do whatever. Who cares if she is sleeping in a carseat - no one! Her health, rest and comfort are the most important things! Maybe in the future they will figure something out for her, but for now I say go for it!

[ValerieC]

I'd definitely let my little ones sleep in a carseat. When my oldest was an infant we always let him sleep in the carseat when we travelled. Up to the hotel room it went and there he would sleep.

I think sometimes you do what you gotta do! It seems healthier for them for now so why not?!

Valerie C

[Cathy]

We let Katie Sleep in a car seat all the time.. in the BUCKET. We used to call her the Baby in a bucket... But she slept so much better when she was in it!

Cathy

[SuziF]

Chelsae,
There are also toddler size recliners....Meri had one & wore it out. For the longest time she'd fall asleep in it & we'd carry her to bed from there. I say do whatever works.

Suzi

[laurasnowbird]

I say do whatever works. My goodness, we aren't talking about something small here - good oxygen sats are vital to their continued good health!

Aidan sleeps well in his bucket seat too, LOL! We keep joking that we are going to try THAT to get a good night's sleep. We are very careful when we bring him in from outside to take off the carseat cover, and keep him cool, though. There were some parents in my area last winter whose baby died of heatstroke because they left her in the carseat in her coat, and I think the seat was placed on or near the heat vent. Very young infants don't regulate body temperature well, and she overheated and died. It was really sad.

Good luck, it sounds like you are investigating all the available options. Maybe a second opinion by another sleep expert would yield some different results? Its the only thing I can think of based on what you've already tried.