Sunday, November 30, 2008

Elephant Nose.....

Rhett has been sleeping with me the last few nights.
This translates into...I haven't been sleeping the last few nights.

At first I thought he was getting sick again. Who knows, maybe he is. But then last night as I was holding him listening to him breathe, I realized that he is having a bunch of apnea episodes again. I remember before his airway surgery this past march this same thing happening.

He is totally relaxed, and then all of the sudden his body will twitch, and he will flail his arms, and gasp. That's exactly what he has been doing the past few nights.

So I put in a call to the on call pulmonologist, and it was recommended that we try the CPAP again. She knew exactly what I was talking about. She remembers Rhett well. She had never seen a sleep study quite like his before. We were told not to get rid of the machine, because at any time he could need it again. Looks like that time has come.

Do you know how hard it is to get a 3 year old to wear CPAP? It was bad enough when he was two. Since then he has put on some serious muscle. This kid could take me down in a heart beat. He tries every day, three times a day when he needs suctioning.

This is what Rhett's CPAP looks like.......

Kind of looks like a reverse elephant nose eh?

It sounds even worse.

We are going to get another sleep study scheduled soon, but until then we need to keep him on his oxygen, especially while sleeping, and try to get the CPAP on him.

After all, we worked so hard to get his pulmonary pressures down. We don't want them skyrocketing again.

Today I am thankful that I know Rhett's needs and can tune into his body when something isn't right. It may take me a few days to figure out what is going on, but eventually I know.


Shari said...

Poor little guy! My husband wears a Bi-Pap and he still takes it off in the middle of the night and then I have to wrestle him to put it back on. I can only imagine for a child to have to wear that. I am praying each day for your little one. He's such a cutie! I am so glad he has you as his Mom.

Isabella said...

It is such a good feeling when you know your child so well and you can figure out what they need even sometimes before the Dr. Rhett is lucky to have such a great mommy like you!!
Hopefully he won't give you too much trouble with the c-pap!!

Niksmom said...

Pam, I had to laugh at your line about how he could take you down in an instant! I know that feeling all too well! ;-)

Hopefully the CPAP will help and it's just a seasonal thing. You know, with the house warmer and drier, he's getting suctioned, etc...maybe he's just adjusting? Ok, I know I'm reaching here...still.

And those finely honed instincts we have for our kids? God bless them and may they never go away!

Maren said...

You made me laugh so hard I snorted. My DH just got his CPAP on Wednesday and we call it his elephant.

Jake & Stephanie Ellinger said...

Nathan has been wearing a BiPap machine at night for the last 2 months. He is only 10 months old but he fights it like crazy. The funny thing is that when he finally gets to sleep, he sleeps so much better than before. Nathan's is a long term thing. I'm REALLY NOT looking forward to age 3 with it!

Good luck keeping that on him!

Anonymous said...

We have a connector for our CPAP machine and O2. It connects the tubing to the CPAP machine. So the O2 comes through the CPAP mask as well. Then they only have to wear one thing.

I'd ask about that if you don't already have it.

Kaden and Angel Ava's mommy said...

Poor guy. That must be a scary feeling for him. I hope he realizes that it will help him sleep more soundly, without waking up to the terror of not breathing. Maybe it would help you sleep better too!!!

I too am thankful to be able to figure things out with Kaden when I need to. I had to take him to the ER Saturday thinking he may have bronchitis. When we got the results that it was, I told my dad that I should be a doctor. My dad got a good laugh out of that, hey, what if I was serious : )?...

Well, I hope that you all get a great night sleep tonight!!!