Using the C-Pap machine with Nolan is a real chore. The poor little guy has reflux so badly that the machine can't get through all the congestion in his nose, and the air blowing against his already-inflamed nasal passages causes him great discomfort. Listening to him cry in pain until he goes to sleep is simply awful.
And then he gets the bronchitis-sounding cough in the morning, and a very hoarse voice. All this from only using the C-Pap machine for 3-4 hours every night. I just don't think this is going to work for him.
We're persisting until we can see the Sleep Clinic neurologist on the 5th, because Nolan desaturates without the C-Pap. Of course, he is so congested that we doubt it is doing any good, but I need the doctor to see the congestion and hear his lungs. Docs tend to "get it" better when they can observe the actual effects, rather than simply being told about it by the parents.
The sleep issues have me worried, because Nolan starts school on Thursday. His teacher has been forewarned, thank goodness. Nolan frequently sleeps until 8:30am or later - and before anyone says, "WOW, I wish my kid did that!" keep in mind that Nolan desaturates constantly, and has "arousals" every minute of sleep. He wakes up, at least partially, at least 60 times per hour. This is why he sleeps until 8:30, and is still cranky as a bear.
When school starts, I have to get him up at 6:30am, so that he can have his Nexium at least 30 minutes before breakfast. Then I have to get him to eat (for Nolan, this usually takes 45 minutes), get the Zantac into him, set up his FM system, and get him to the bus stop in a fairly decent mood. I'm pretty sure the other things will be no problem, but the decent mood part is going to be tough.
I suppose we'll see what happens once school starts.
7 comments:
Oh Leah, my heart just breaks for all the struggles Nolan (and you!) is/are facing. Hope the Sleep Clinic Neuro has some helpful wisdom,
Julie
Its so tough being yourself I am sure, really you both suffer so much.Wish there was some relief somewhere for him.
:( Not really anything else to add. Thinking of you.
Oh my! That's quite the challenge. I hope you take a nap as soon as they are both on the bus!
Is there some reason C-Pap is preferred to supplemental O2 at night? It seems like the C-Pap is creating a lot of new frustrating issues on its own!
I hope he surprises you when school starts. I was so worried about KayTar and her energy before school started and wouldn't you know, she has been the first one awake every day!
6:30am?!! Yikes. And I thought I was in for a difficult Getting Your 4 Year Old to School in the Morning experience. Well, I am, what with all of X's sleep and self regulatory issues, but you have some special challenges. So interesting to me one year after JTC that I truly understand how crucial sleep is to our kids and that those OT lectures applied to us. If only we could control our children's sleep cycles. I hope that the clinic can provide you with the guidance you need. xx
Hang in there! I know you'll work it all out. I have every confidence in your mom skills and doing what's best for Nolan. I know it doesn't really help but I've often put Lauren to bed a 5, 5:30pm because she's a wreck...
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