Hi,

It is day 3 of Chris's alternative lifestyle.  I thought I would write about it as she gets going so other parents who's kids might need cpap can see what happened with Chris and see how we handled things.

Anyway I have other posts under "tatamom" so I will not repeat all those but start where we are as of yesterday.

Yesterday I was looking at the hose and realized that our loving cat had bitten several holes in the hose.  I fixed them with duct tape and made a cover out of polar flece to cover the hose.  It takes a pannel about 5 1/2 to 6 inches wide to make a cover that is easy to pull over the hose.

Last night Chris went to bed with the cpap without a fuss.  She slept for about 9 hours with her cpap, but she kept opening her mouth and so she sounded like Darth Vader.  She was sleeping with me, so I would close her mouth, sometimes it worked and other times she would start to breath through her lips.  I decided that she would probably need a full face mask to prevent this problem.  She woke up about every 2 hours and took off the mask.  I would patiently tell her that the mask was on her face and that we needed to put it back on, then I would start the ramp all over again.  She would allow me to replace the mask and go to sleep again, once she even helped me put the mask on.  I learned that for now it is easier to have her hair in braids so it does not get tangled up in the straps.

Today we went back to the DME and she tried on full face masks.  We had a problem finding an adult small that would fit her.  She tried 3 and ended up with a small respironics ComfortFull 2.  It is not the perfect mask for a 7yo, but it has the least leaks.  I wish they made a child sized full face mask.  I told the DME that our cat ate the hose and they were nice enough to give us another hose --no charge.  Her olde brother and sister have tried the cpap and thought it was cool.  Her brother wants one.  I think Chris is willing to use the cpap because her brother can't have one.....sibbling rivalry.

To make the hose more cat proof and child friendly I bought some fabric and made a hose cover.  It looks a lot more fun than the plain grey tube (and the cat does not think it looks like a rubber band...her favorite food).  Next time I will take her with me and she can pick out her next cover so she can have a choice as to what the hose looks like.  I was also thinking of getting glow in the dark fabric paint to make it more fun.

So last night AHI is average 2.5 (first night 2.8).  Total mask time 9 hrs.  Ramp start 4cm, ramp time 40 min, final setting 8cm.

Sounds to me like she's doing great for a seven year old.  All these adults on here seem to have many more problems.  Why not paint her new FF mask?  You could make it like an animal or just a colorful design.


_________________


Acronyms and Often Used Forum Phrases
Respironics? M-Series Auto w/ HH & C-Flex; Flexfit? Hybrid? Mask, Encore Pro 1.8i

I love this thread and the take on the "Diary of a ..." thread.  Keep it up!!

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Day 4

Thanks for the idea of painting the mask hhopper.  I had not thought of that.  I think I will save that idea for when she decides that she is tired of this.  So far she has been great.  She likes the new mask and is a very happy hosehead.  Her nurse at school is also a hosehead, so Chris was telling her about keeping the mask on all night yesterday.  It is nice that there is someone else that knows who is also using a mask and can be truly impressed by her progress.

Last night I had to trim the straps because she was unable to get the mask tight enough to get a good seal.  I am glad that the straps are neoprene, so I am able to make them fit without damaging anything.  She is having a minor problem with the back part of the mask that connects the top and bottom straps.  Her head is much shorter than an adults and she is getting a bump in the straps on the baack of her head.  I'm not sure if I should try to cut and resew these or not.  

She is one happy mini hosehead.  She did not complain at all about getting the mask on.  Actually, when I told her that it was time for the mask, she pulled the blankets over her head and said "Dive.....Dive.....Dive.....where is my mask, I can't dive without it"  I like her sense of hummor.  She slept very well and only woke up twice in 9 hours.  Her mask was leaking on her cheeks, so I had to tighten it in the middle of the night.  One of the times when she took the mask off, she also took the connector from the mask to the straps off.....so I was looking around for a little piece of plastic and trying to keep her from falling over at the same time.  I found it ok, but I am wondering why they have a small piece that can be separated and lost on the mask???  I have learned that a whistling sound means that her mask is leaking again. Her mask leaks on the side and up by her eyes.  She is able to sleep anyway she wants, but gets tangled up in the hose.  She does have a leak problem, but even with the leaks the full face mask is working better for Chris.  

Chris's best fun was scaring the cat off the bed by turning on machine when the mask was off and hosing the cat.  The cat will learn to stay away from the hose.......apparently cloth covered hoses don't taste as good as plain ones, no new bite marks......

Last night AHI 2.1, Mask time 9 hours, ramp 4.5 cm. final pressure 8cm

wow she is doing great i had more problems then she is. there might way of using different headgear with that mask and also they do make petite sizes in some masks. i know that because i'm a petite myself check online with different companies that make cpap and masks. i'm glad to hear that cat has figure out that hoses are not some thing to play with.
janey

Day 5

Last night Chris was great.  She did not take the mask off at all and had very little problems with leaks.  However she kept me busy re-attaching the hose.  She managed to pull it off the mask 5 times after 1am.  She did not even know I was putting the hose back on, so we did not need to restart the ramp...yea!!!!

Christina was known for her sleeping style........like a rugby player.  She is dangerous to share a bed with, I have actually had her feet land on my head  (not fun at 2am.....good thing she is small).  For the first few nights with the cpap she was a very calm sleeper and did not move around very much.  I think the honeymoon is over, last night I was kicked at least a dozen times and she was turning and flopping like a fish.....I supppose that could account for all the disconnects.  I was really hoping that all her kicking and flopping was due to apnea and that perhaps she did not have PLMD.  She is better, but still has a problem.  She is fine when she goes to sleep, but from 2-4am she is moving a LOT.  She wants to get rid of the rail on her bed, but I don't think that would be a good idea untill she stops moving so much.  This part of the sleep problem can be the neuro's problem.

I would like to fill you in on Christina's history.  This might explain why she is such a compliant child and doing well on cpap from the start.  When our neuro said she would not do well on a cpap I told him that he did not know me or my child......this is what he did not consider.

 Christina has had several MRI's and CT's and more chest x-rays than I can count.  She is at risk for lung cancer due to a rare form of cancer that she had when she had just turned 3.  Her cancer was treated with surgery only, but she was left with a very large scar that looks like a lightning bolt.  (when the kids at school saw it and asked about it she said "I was attacked by aliens")  Don't worry as far as we know she is fine (4 1/2 years after surgery) but the drs can't tell us much because only 300 children world wide in the last 20 years have had the same thing.  The reason I am mentioning this is because I realized very early on that my attitude toward her cancer and resulting scar could handicap her more than the actual problems.  So we turned her dr trips, tests, and other things into a normal part of her life.....no big deal....no treats or presents.....just lunch with mom and an Ice Cream if you get stuck.  So that is our attitude toward apnea...it is just part of life.  I do feel sorry for her, just like with her leg, but she has to live the rest of her life (probably) with this and I can make it much more difficult if I am coddling her and treating her different that last week or last year.  

 She has learned since she was very small that if I will tell her the truth about what is going on even if it is going to hurt.  I have always been as honest as possible with her because she needs to trust me.  I told her that this was no big deal, just a box and a hose and a mask.  So that is how she has taken it, just a machine, not the end of the world as she knows it.   I have to keep re-explaining her scar and cancer as she grows and I am sure I will have to re-explain apnea as she grows as well, but that is ok because she will be here to question me about it.

On the way home from the DME she was tellling me that she was unlucky.  I told her that she was very lucky and she asked "why, now I have a box?".  I told her that she was lucky because the treatment did not involve anything that would hurt.  I also told her that she is very lucky that we learned about this when she was 7 before it hurt her body.  She wanted to know how it would hurt her body and I told her that it wears out your heart and lungs. She said that sounds bad and I said yes it is.  I can not allow her to feel sorry for herself, this is not the end of the world......it is the beginning of a bright new future.....

Anyway that is the other info about Chris that might help you to understand how we are handling this new adventure.

Susanne

Last night....Mask time 9 hrs, AHI 2.1, L/Min 16.5, 1 40 min ramp @4.5,  8cm total pressure

Wow.  I am so impressed with Chris and with you as a mom.  Way to go!

Sara

Day 6

Hello,

Last night was a little harder than the previous nights.  Chris is doing great, the problem was me...sort of.  I put Chris to bed at 8:30 and she put on the mask and turned the cpap on.  I left the baby monitor on.  All I heard on the monitor was static.  When I got ready for bed at 10:30 I walked in the room and realized that the static on the monitor was actually the cpap.  It was so loud it sounded like a plane taking off.  I checked her for leaks and the hose-mask connection...all of them were fine.  I don't know why it was so loud.  I felt horrible having her sleep with such a loud noise right next to her head.  My best guess for the noise was that it had something to do with her sleeping position.  All night long there was a lot of variations in the machine noise, much more than on the other nights.  

When she woke up this morning she had a very nice mask kiss (mark) that I can still see at 7pm.  I don't know if the mask was truly too tight or if she is having a reaction to the silicon.  She has proven herself to be allergic to medical grade silicon gel sheeting.  It is sad to say, but I hope I just made the mask too tight.  If she becomes allergic to the masks I don't know what is left.
I just bought some Cetaphil moisturizing cream and hope that will help her skin......unless she reacts to that as well.

Now for the good news, Chris is still a happy minihosehead.  She is sleeping well, but has to learn that she can't sleep on her tummy with her face in the pillows......blocks the exhause vent and makes the hose come off.  She had a great time washing her mask today, it is her job on the weekend.

My plan for tonight...ditch the mommy guilt--she was not hurt by all the noise last night....change the monitor setting.....be very careful about how tight the mask is......double check the safety valve just in case of more problems...

Mask hours 11, AHI 2.2 L/Min 13.2, and she left the mask on all night.

tatamom, NO LOTIONS OR CREAMS prior to hook up chris with interface (mask). lotions and creams can ruin masks in big hurry.most of the lotions and creams contain some type oil in them. this will react to interfaces and eat them up very quickly. try single layer roller gauze around interface and tape it to the mask instead. call DME and ask what you can do otherwise


janey

Gee Janey, you're typing awfully loud!


_________________


Acronyms and Often Used Forum Phrases
Respironics? M-Series Auto w/ HH & C-Flex; Flexfit? Hybrid? Mask, Encore Pro 1.8i

Susanne,

Chris sound like my Adira.  She has always been a sleeping kicking, tosser and covers puller-offer.  Now that, at 14, she is going on 5' 8" and 150 pounds, her tossing is pretty dangerous.  I've though about taking her to my sleep doc. to have her sleep evaluated.

Some people rig up a hook at the head of the bed to hang the hose.  Search for it here and Google it and maybe you can find it.  Maybe it would help detangle the hose.

I'm a covers diver too.

What a wonderful daughter you have and what a wonderful mother you are!!

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Day 7

Christina has found a use for the nasal mask that did not work, it is now on her teddy bear.  Her bear looks quite cute, and the mask could be a full face mask for the critter. She just made a cpap machine out of lego's and connected the two with a straw.  She is having way to much fun with this stuff.

 I had asked the DME about what I could put on Chris's face when it became irritated, they said anything that was not petrolium based.  I checked the suff I bought for this and put it on several hours before she went to bed.  She is also cleaning her face with a wet wipe before putting her mask on.

Last night we started over getting the straps correct, and this morning she did not have any mask kisses, except on the bridge of her nose.  So she was happy today.  Last night was much better.  Chris was much calmer when she was sleeping.  She took the mask off in the middle of the night to readjust it so it was not pushing on her grownup teeth.  I woke up and asked what she was doing and she said the mask was pushing on her teeth.  She made herself comfortable and went back to sleep....no leaks....no ramp.  She only lost the hose 1 time last night.  I hope she can go back to her room in a few days.  

Chris is doing great, but I am wondering what the long term consequences of the cpap and mask will be on her facial growth and development?

Susanne

Mask time 10 hrs, AHI 2.2, L/Min 11.2, no removing the mask  

wow, I lost a day somewhere.....that happens when you are a mom......

Ok on day 8 she had a lot of problems.  She was kicking a lot at night and I could hear her apneas.  
She would not breath, then kick and start breathing again, then stop...kick and start again.  Her AHI was 2.5, but that was the average for 7 days, not just that night.  When I went back and recalculated just for that night it was 4.3 (the lowest individual night was 1.2) and she had a lot of the episodes in a short amount of time.  I called the DME to get a smaller mask and mentioned that the AHI was going up and they said it was under 5, and not a problem.  I had the "opportunity" to educate them and them that the cut off for a child was 1 not 5.  I also had a enlightening conversation with the sleep lab director when I tried to get Chris's sleep data.  They did not want to give it to me, they wanted to send it to the neuro and have him send it to me.  I told them that I wanted to pick it up from them not the neuro.  I was told by the director (non medically speaking of course) that the criteria of an AHI of 1/hr for a child was only in the case of ADD/ADHD or events that wake them up.  Other than that it is fine.  I told him which journal article details how and why they came up with the criteria of an AHI fo 1/hr or 10 events/night as abnormal.  I think he was a little shocked by the amount of information I had. I told him I have been researching apnea in children since October, I need to know how to help my child and I can't if I don't understand what is happening.

I have (quite literally I might add) tracked down the ped pulmonologist I want Chris to see.  I called them a week ago and had not heard from them.  I called on friday and their phone was disconnected (they had changed numbers and the phone company was not giving out the new number).   I went across town to see what was happening with their seeing Chris. (I did tell the that I am usually a very nice mom who does not stalk drs on the other side of town).  They wanted a referal from her neuro or pcp, but when I showed them the summary from her last sleep study they decided to skip that step and set her up for an apt.  She will be seen March 8th for the most through exam she has ever had (even more complete than the onlcologist).

Last night (#9) she was very peaceful and quiet.  No major kicking or apnea episodes.  No mask removal or pulling the hose off.  Nice and quiet.  Tonight....she goes back to her room......

#9, 9 hours mask time  AHI 2.3, Leak 7.5, all lis well (for last night at least ....tonight is anyone's guess)

Quote:

the cut off for a child was 1 not 5.

That's very interesting.  I know you want to go to the Children's hospital sleep clinic.  Do they have a DME there?  I hope so.

Quote:

I did tell the that I am usually a very nice mom who does not stalk drs on the other side of town

And that's just hilarious.

Quote:

She will be seen March 8th

A fortuitous date.  It's Sleep Apnea Awareness Day.

Day 10

Chris finally moved back to her room   .  She did very well last night, but apparently had leak problems.  I was listening over a baby monitor for any problems, and heard her readjust her mask, but she never asked for help.  I reminded her today that I am there to help her any time she needs it.  She slept well and was in a good mood this morning.  I calculated her AHI for last night...1.3 a terrific number, but still over 1.  She did go to school with a mask kiss and mark on her nose  

I made her a new hose cover, it is a bright tye-died color fabric full of big smiley faces..... .  She loves it and it makes both of us smile when we see it.  I have decided a colorful hose cover is a necessity, it makes this so much more fun and less medical looking.

We are still trying to get a smaller mask.....I wish our DME had more children as customers, but then that would mean more there would be more apnea kids.......

Mask time 9.5 hrs, AHI 2.3 7day avg, L/Min16.8......eye leaks