Thursday, November 24, 2011

CPAP: The Second Night

We were not put off by the long first night and so the second night I was prepared with a few changes.  We put the hose through the headboard and got Justin a better pillow so his head didn't move as much.  I also upped the humidity setting on the warm air he gets through the hose.  I was able to get the mask on without any additional help and Justin didn't get as upset.  When we said it was time for bed he put his hand on his mouth to say that it was time for the mask.  I was very encouraged and ready for a better night.

He woke up the first time 2 1/2 hours after we went to bed, with the same flailing as the night before.  That was the longest time he had ever gone without waking up so that was great.  But he was still a little too upset when he woke up, so that discouraged me.  But the rest of the night was better:  He ended up waking up about 7 times, but he wasn't upset at all when he woke up.  All I had to do was talk to him and tell him to calm down and lay his head back down.  It took a little coaxing, but he didn't fuss and he did lay down.  The last time he woke up was about 5:30 or 6 and so I took off the mask and told him to lay down.  He went back to sleep until close to 8 am.  I counted the night a resounding success and definite progress from the previous night.

Wednesday, November 23, 2011

CPAP: The First Night

The CPAP machine was delivered yesterday.  The respiratory therapist arrived around 1:30 (30 minutes past nap time) and she showed me how to use and care for the machine.  Justin was sitting in my lap and Travis was standing next to me while she had pulled out the water reservoir to show me how to open it and clean it.  To get it out of the machine, you have to lift a door on the top and slide it out the front.  While it was open and we were talking, Justin pushed the door closed.  Travis pulled it up, Justin pushed it closed.  Then Travis pulled it up so hard that the pulled the door right off.  The respiratory therapist gasped quite audibly and froze.  When she regained her composure, she sputtered, "That has never happened before.  I am not sure it can go back on..."  She spent the next several minutes attempting to reattach it.  She finally did get it back on and she turned to Travis and said, "Don't ever do that again!"  He did one of those half laughs and stood very still the rest of the time.  He said he wouldn't touch it at all.  (And so far, he hasn't!)

She went through her whole spiel.  They sent another mask for Justin (appropriately called the "mini-me") which seems less cumbersome and might work better.  The hose attaches to the top and goes over the top of his head so it stays out of the way.  Here's how it looks on him.  It's really not too bad.  The one bad thing we discovered is that the mask kind of pulls whichever way the tube goes. 

The therapist tried to show me how to put it on Justin the very last thing before she left.  By this time it was 2:15 and way past nap time.  That did not go over very well.  She said that she had to do it so we did it quickly and then yanked it off.  I had planned to let him try it for nap, but there was no way he was having any of that so we put off trying it until night.

That night was the first night.  It took both my mother and me to get it on him.  Once it was on he didn't try to pull it off.  We put the machine on the floor at the foot of his bed.  We ran the hose around the headboard to come up the side by his pillow.  We learned that caused the mask to pull and the next night we put the hose through the slats in the headboard.  (Much better!)  I planned to sleep on the floor by his bed so I could be there when he needed me.  I had all my supplies:  kleenex for crying and nose-blowing following overnight hysterics, a flashlight to check the fit of the mask, and a clock to give me some idea of time.   It took him an hour to go sleep.  He went to sleep very peacefully, but then the fun began.  He woke up at least 17 times. (I lost count after that...)  And he would sit straight up in bed and flail his arms.  We had practiced breathing deep through his nose so we would do that to calm down and then I had to coax him to lay back down.  Some wakings were quick and others took several minutes.  He never tried to pull off the mask, but he wouldn't let me adjust it.  Since he had been so uncooperative when we were putting it on, I didn't think I got a good fit.  The hose pulled it off center and it was off his nose by morning.  He woke up around 6:15 and I had him lay in bed until 6:30 before I would let him get up.

The night really went the way I expected it to go.  It's just a question of how long it will take to improve.  Justin was really tired during the day but I hoped it would make for a better second night because he would be so tired.  I haven't had much time to blog because I have been with Justin whenever he is asleep ( I go to bed at 8 pm and we do naps together too.)  I will tell you how the next few nights go when I am more awake!

Monday, November 21, 2011


We went back to the doctor this morning to find out the results of Justin's sleep study.  The doctor said that Justin had mild sleep apnea the first part of the night, prior to the CPAP.  When Justin settled down and went to sleep he had some incidents of apnea and snoring, plus restless sleep.  When they put on the CPAP machine, they began titrating it at the lowest setting and he didn't have significant improvement so they upped it to the next setting and that did the trick!  He did not snore at all, he didn't have any apnea episodes and he slept calmer.  Wow!  I am so glad that we got such great results at such a low setting.  That will help him tolerate it much better and still be effective.  She thinks the CPAP is what he needs to get improved sleep and correct his sleepiness.  Right now Justin goes to bed around 8 pm and wakes anywhere between 5:30 and 6:30 am.  She recommends that he go to sleep at 7:30 pm and sleep until 7:30 am.  That plus a two hour nap will get him the recommended amount of sleep he needs for his age.

So the doctor ordered the CPAP machine and said that we would hear from the medical supply company within a few days.  They will come out and show us how to use it and care for it and make sure we have the supplies we need.  With the holiday coming up, I figured I won't hear from them until next week.  I was surprised to get a call during dinner that they had received the order for the CPAP and that they could come out tomorrow before nap to get us set up!  That will be wonderful because my mom (who uses a CPAP) will be here and she can help Justin get used his and they can be twinkies!

Please be praying that this transition will be as easy as possible.  I am expecting some trouble and lots of waking during the night, but I really think Justin will do well.  He's been playing with his mask and he doesn't mind wearing it at all.  And the low setting should make it fairly easy to use.  In his own bed without any extra wires, he should be fine.  I am praying that this is the last phase in the long journey to better sleep!  After Justin uses it for a few weeks we will go back to the sleep center for an evaluation and they can read the data off the card to make sure it's all doing what it's supposed to do.

Sunday, November 13, 2011

Sleep Study - CPAP

We went for Justin's third sleep study to titrate the CPAP machine.

It was the first time we have gone when it wasn't a cancellation appointment so we had lots of time to prepare.  My mom uses a CPAP machine so she napped with Justin this week and showed him how it works and he got to try it on and test it.  He didn't mind the mask, but he did not like the air at all.  I was glad we could prepare him for what was coming, but it was still tough.

He knows exactly what to expect and he was fine up until the nurse had to begin hooking everything up.  We had John helping us this study and Justin did not click with

Justin got to watch Barney, as promised.  All was good until the pile of wires came into view.

No pictures of wire attachment because it took all my energy to hold him still enough to place them.  There was no discussion of the best way to do this or how to make it less traumatic.  John's method was "get it done...get it done fast...the more tape, the better!"  We went through a box of kleenex wiping and blowing poor Justin's nose.  And I was fighting this internal battle like I fought when we handed Justin over for heart surgery.  I know it needed to be done, but I didn't want my son to hurt.  And Justin's mournful cries for "mamaaaa" nearly broke my heart.

So here's with the top part of his head attached.  Still needed chin, chest, thumb and nose.  Plus the fancy hat!

Now he had on the stocking cap.  He missed almost all of Barney with all the screaming.  When it finally ended he wanted us to restart it.

They put the pulse ox on his non-sucking thumb.  One of the good things John did for Justin!  You can see everything hooked up to the box on the bed behind him.  I had to take all the pictures holding the camera out in front of me since Justin wouldn't let me leave him.  You can see how red his poor little nose is!

Completely ready for bed.  He had to calm down for us to attach the nasal cannula so it wouldn't get filled with snot!  I am so grateful for his Bee!

The study was scheduled as another split study: the first half of the night was without the CPAP and the second part was with it.   That was not what I expected and I expressed my concerns right away because the last time Justin didn't meet the requirements for the CPAP with enough time left in the night to try it.  I did not want that to happen again so that we would need to come for another study.  John said he could call the doctor and see what he said.  I never found out what the doctor said and we just went to sleep without me knowing what was planned.

Around 12:30 am John came in (with help) to attach the CPAP.  He said that Justin hadn't been experiencing much apnea, but that he would try the CPAP to see what happened.   It took some time to get it put on and Justin did not like it.   By this time, Justin was screaming any time John would come in the room.  He didn't even have to touch Justin for him to start screaming.  Some of his more blood-curdling cries were when John wasn't touching him!

Justin didn't mind the mask so much, but when they turned on the oxygen, he started fighting.  John finished and I was left with the task of getting him back to sleep.  The words I found that worked the best were, "Calm down and go back to sleep.  We cannot go home until you go to sleep."  That actually made him lay back down!  When Justin finally relaxed and was sleeping (I think), John came back in and had to change the nasal cannula because, would you believe, it got clogged!  That set off another round of hysterics and I had to start over again.

Somehow, we made it through the next 5 hours and we were awakened at 6 am.  I got a picture with the CPAP before John took it off.  The entire night Justin didn't try to take it off.  I think he would wake and it would scare him and then hearing me talk in his ear would remind him of what was happening and then he would settle down again.

Taking everything off caused more hysteria and poor Justin was not happy by the time he was finally free.  I learned a little more about John's philosophy:  more waxy goop, the better.  Justin's hair was coated and it still isn't all out of his hair.  I could only scrape so much before Justin pulled away. 

Poor guy!

So how do I think it went?  In spite of all the tears and trouble, I think Justin slept much better with the CPAP machine.  I think he fell asleep quicker and slept deeper.  He was more still when he slept (not so much flopping) and calm.  When I nap with him, I notice that he seems to hold his breath as he's going to sleep and I need to tell him to remind him to stop.  When Justin laid down, I felt like he slept very quickly with none of that weird breathing.  Of course, this is all my perception in a completely dark room while I am sleeping in the same bed with him.  We have an appointment next Monday to hear the official results.  We got to keep the CPAP mask and Justin put it on show Randy and my mom, so I don't think he would mind wearing it.  I think being at home, with no extra wires and no John we would do just fine.  Now we wait and see.

Tuesday, November 8, 2011

Travis News

So Randy e-mailed me last week to help me correct some of my spelling errors, plus to remind me of the big thing that happened to Travis last week:  He pulled out his (third) tooth!

He tried to tell me it was loose, but I didn't really think it could have gotten that loose in the few days since I had felt it last.  It can, and did!

We were having lunch with a (slightly older) friend and she told Travis that the tooth fairy at her house growing up paid more if you pulled out your own tooth rather than having parents pull it.

So at naptime Travis came out of his room trimphantly and declared, "Mommy, I pulled out my tooth!"

So who's paying the premium on this tooth I wonder??

Wednesday, November 2, 2011

A Few Things

Here's some of what's happening around here:
  • Justin has started doing stomach crunches when he gets his diaper changed.  He lays down, puts his hands behind his head, and up he goes.  It's a hoot!
  • When the boys' cowboy vests arrived, Travis started playing cowboy.  He came in wearing his vest and asked me (the ranch foreman) what he needed to do.  I sent him to go check the cattle.  He came back and said they all got away.  I said that he needed to go find them!  He said that he couldn't, they were in North America.  I couldn't bear to tell him that we are in North America, so I asked him how he knew that's where they were.  He said, "I have GPS!"
  • Justin has a few new words:  "blow" and "purple".  I love making him show off!
  • Justin has a sleep study to get his CPAP machine next week.  Please pray it goes well!
  • We moved Justin to a toddler bed tonight.  I eventually want to move both boys together and this is the first step.  Plus, I think the CPAP machine will be easier with the toddler bed.  I am not at all sure how to make it an easy transition.  I am preparing for many sleepless nights and lots of daytime napping!
  • Travis went fishing today with Me-Me and Pop and he caught two catfish!  Guess what we had for dinner?  (They were already cleaned or there is no way I would have touched them!)  Justin probably ate an entire fish himself.  I will post more when I get pictures.
That's about all the cool stuff for now.  We are enjoying the cooler weather and spending lots of time outside.  It's wonderful!