C-pap for J

Several weeks ago, J went for a sleep study at our hospital. Since she was allergic to metal, she was unable to go through with the study; where they glue all of the electrodes everywhere. Apparently they have not been able to find any adequate "metal free" electrodes for her to use.

So, the Dr. sent her home with a C-pap machine. Her actual machine looks like this...and has a built in humidifier:












Here is what her mask looks like:



She will wear it during sleep for 2 weeks. There is a memory card inserted into the back of the machine, where her number of episodes of "not breathing" will be recorded. What happens is this: The machine is set to "5" for the amount of oxygenated air that blows in for her to breathe. When she holds her breath, the machine can sense this and blow more forcefully to "force" her response to breathe...up to a "12". The machine will record in this way every episode where she holds her breath.

J was initially excited about her new "fun" machine. She played with it most of the afternoon. The "in home" therapist said she could play with it...to get used to how it works, and feels on her face. She wore it while doing her school work...Bubb also checked it out for fun!

However...the novelty wore off about 1 hour into actual sleep time.


She woke up several times complaining that she felt she was suffocating. She pulled it off several times. Since J and Bubb share a room (only for a few more months while husband is completing his residency) Bubb was like a daddy rooster fussing at her for pulling the mask off.

David heard them once, and made J put it on again. I must have been in a deep sleep...Bubb said he screamed at her...we never heard that! Of course...to ADHD, their idea of a scream is much more exaggerated than an actually scream.

We've got to come up with a way to bribe this girl into keeping that mask on!! lol! She won't have to wear it forever, like in the case of an adult who would. The Pediatric physician explained that if her airway is obstructed during her sleep, she is losing vital oxygen to her heart. In children they can usually correct this by removing the tonsils and adenoids. This will open up the airway to keep it from closing off during sleep.

Sleep Study for J

While J was in the Pediatric Intensive Care Unit for two days, the attending physician shared concern for her breathing patterns.   On many occasions her oxygen levels dropped significantly, and we would have a time getting them back up.  

Some of this was due to her lower left lung deflating issues post surgery, as well as coming off of so much general anesthesia.  She was holding her breath, and breathing so irregularly.  

The Doc. asked if she did this at home.  We told him that lately we have noticed her snoring more often, and she does hold her breath at times.  Honestly, she does most of this after we have all gone to sleep, and she gets in that deep sleep.  When I get up in the night (because a bear is keeping me up with his snoring, I would hear her at times.)

Tonight is her sleep study, and we will know for certain if it is sleep apnea, or something else...or nothing at all. :)  We are praying for the "nothing at all".    Yet, if it is something, we want to do whatever we can to get her the help she needs.  

David and I are also going to have sleep studies done.  We both hold our breath in the night, and David snores horribly...as well as holds his breath, and does this weird noise...like he is being strangled.  All during the night I am hitting him to breath.  So, needless to say, I'm not sleeping to even breath irregular myself, because I'm laying there listening to make sure he is going to breath! lol!  

So, we'll see how tonight goes.  :-D

One parent must accompany her...that will be me...(since I don't tend to snore.  ;)  Well, I do snore at times...  

I was told that the sleep study rooms are set up like hotel rooms.  There is a TV with basic cable, and I think we have our own bathroom.  We can bring ipods, cell phones, games, etc.   There is a refrigerator for light snacks or drinks.  Lights out by midnight. :)

Breathe Steady; Sleep Study

This is how I coached J this morning: Woog, slow down and breath steady...even if you can't take in a deep breath yet...just BREATHE steady and slow. She panics when she cannot get in a deep breath, then she works her way into hyperventilating and crying altogether.

Ever since she had the deflated lower part of her left lung after surgery, if she goes too long laying, she can easily slip back into the shortness of breath mode.

This weekend she wanted to lay a lot, and sleep a lot. I had to make her sit up, and walk. Usually she is telling me that she wants to get up. I think all of the weeks activities that we did...walking, coloring and sitting up more...took a tole on her. She just wanted to rest a lot this weekend, and had more back pain. Yet, it ends up causing her breathing issues to relapse because I let her sleep through times when she needs to be doing breathing exercises.

I told her today that we have to keep up the breathing exercises...even if that means I have to wake her from a nap. Which I had to do because I know she needs her sleep. We just do not want to risk anything with that weaker lung.

We went for a nice walk outside this morning after breakfast. The temperature outside is much warmer and sunnier than it has been. She enjoyed being outside too. We saw our very sweet neighbor and her two young children. We had a short talk with them. She really encouraged J by telling her how wonderful she looked, and how great she is doing with recovery! This gave Woog a smile.

It will be so nice when it really warms up, and we can all get into the swimming pool. I think she will find it so relaxing in the water.

We are entering week three post-op. J's follow up/post-op appointment with the pediatric scoliosis surgeon is on Feb. 17th. That will be next Tues and the 3.5 mark for her.

OH, I don't know if I mentioned this before. While we were in the hospital, (and when the nurses were watching J's oxygen and breathing), J kept having issues where she was holding her breath a lot. This concerned the ICU Dr. (who is actually over the whole Peds unit) He said she is showing strong signs of sleep apnea. Therefore he put us in contact with the sleep study physician, who set her up to have a sleep study on Feb 27th. That is, if she is able to do this with her spine recovery. If she is still on the pain medications, they may want to wait until she is completely off of them.

I'll keep you posted on this too. :)

David and I are also going to set up sleep studies for ourselves. Ever since I was young, I used to hold my breath in my sleep. I remember being at the beach with my friend Leigh Anne and a few other friends, and she told me they had to shake me to wake me up to breathe, because I was not breathing at times and if freaked them out. (Do you remember that Leigh Anne??) Well, I still do this, and that is not a good thing for my heart. David also does this. Plus he snores terribly and holds his breath. So we are going in for sleep studies. :)

Bubb is the healthy horse of our family. ;) Aside from his ADHD, he is doing well, and he does not snore either. heehee!