Lots of Info – What to do?

I have heard from Otolaryngology (ENT) …again, why do we have to know how to spell this?
The results of his sleep study are this:
He had 6 Obstructive Sleep Apnea (OBA) which were not technically “true” apnea. They were Hypopnea or periods of shallow breathing, which can affect oxygen saturation levels. If they were true apnea, he would have stopped breathing.
He had 8 Central Sleep Apnea (CSA) with 7 of the occuring during REM sleep, or the deepest part of sleep. CSA occurs when the brain fails to get the signal to remind the body to breath. This is usually seen in children with Achondroplasia who have compression of the Foreman Magnum.
The lowest his oxygen went was to 91% with a majority of his oxygen staying at about 98%, this is good.
The sleep lab, then calls me an hour later to schedule an appointment with their clinic May 4th at 2:30 to meet with the sleep disorder doctor to plan a course of action. When I asked what this could mean, she said it could mean medication, a CPAP or any other course the doctor wants to take.
So, needless to say, I am anxious. I want to say one bothers me more than the other but the truth is they both bother me the same.
If his Hypopnea is severe enough and his breathing becomes too shallow, his blood oxygen level goes down to far and it could be very difficult for him to recover. If his central apnea continues, well, that is not good.
I have placed a call to Dr. Pauli’s office and I am waiting to hear back from them. I want to get this resloved, obviously, but I don’t want anything to drastic if it doesn’t need to be done.
Sleepless in Monroe arriving in theaters today!
Today, I took Knoah up to A2 to have his brace adjusted. Over the past few weeks I have had the oppurtunity to watch him and how he moves in it. We ended up shortening up the back lower half because everytime he sat down he would want to fall over. We lowered the back upper half to give his shoulder blades room to move. Prior to this, if he fall, he was down for the count until someone helped him up.
Think “I’ve fallen and I can’t get up!”
So, with it adjusted, hopefully he’ll be more comfortable in it. We also added some padding to the front of it to make it more snug, he was getting his hands down the front and moving it down. He also managed to find a way to un-velcro it to get it off so we had to double velcro it.
Gotta love him, he’ll find a way out!
On a happy note, Knoah is learning his ABC’s! He can point to each letter and in his speak say what they are. Some are clear, other’s not so much, but his speech therapist says as soon as we get his ears taken care of this should increase his speech. He is delayed in expressive language, as some children with Achondroplasia are, so this too will take time.
He can count backwards from 10 and loves watching the microwave as he is doing this, so I have been making a lot of popcorn lately.
I am so sad, he’s growing too quickly!! He’s a big boy now!




This post has 14 comments
April 1st, 2009
It’s good to talk with Dr.Pauli. I sent him Nathan’s sleep study and MRI results as a second opinion. I was told that some of the results showing sleep apnea was not true sleep apnea. Although each child and results are different it’s nice to have someone who deals with achondroplasia look at the results.
April 1st, 2009
Tonya!
Are little babies are growing up TOO quickly – I had to buy Caden 2T tshirts this weekend … what happened to 6 months :0(
As far as the sleep study results – you can look at it this way, they must not be too concernend if they aren’t seeing you until May 4th. I remember our pulmonologist saying 5 obstructive hypopnea episodes or less is not of concern and can be thought of as average. As far as the central apnea – I’m not so sure what to think about that. Make sure to let us know what Dr. Pauli says about it!
Knoah’s Oxygen averaging around 98 while sleeping is awesome! Caden’s averages 94/95 hence why he sleep with .3 L of oxygen!
.. and his ABC’s, what a little smarty :0)
Trisha
April 1st, 2009
We are keeping you all in our prayers and hoping the next steps with sleep go smooth! I can only imagine how tough that must be to go through! What a bugger getting his brace off! Funny how no matter how young they are they find a way to get that stuff off! Sonya barely wears her braces anymore as we can’t keep them on her! I even duct taped around the straps once but then realized how hard they were for me to get off when she needed a bath! I hope he gets more comfortable in his! Yay for ABC’s and the countdown for popcorn! Super cute and super smart, Knoah has it all!
April 1st, 2009
Gosh Tonya…I wish you knew the course of action for Knoah right now. I’m sure the waiting is driving you near the edge! Hang in there!!
That’s so cool Knoah is learning his ABC’s!! What fun for you all…and the microwave countdown is Ellie’s favorite thing to watch, too. He sounds like he’s a smarty pants
April 1st, 2009
Good luck with dealing with the apnea! Glad to hear that you were able to get the brace adjusted to make Knoah more comfortable. What a big boy learning his letters and counting!
April 1st, 2009
After Anaïs’ fist sleep study, when they told us she needed spinal decompression, I sent the MRI and the sleep study results to Dr Pauli and talked to Peggy Modaff, they were super nice. I think it was so nice of them to give me a second opinion like that without knowing us. Keep us posted!
April 2nd, 2009
I hope you hear back from Dr Pauli very soon re the apnea and agree with above…they are waiting until may so cant be too worried. if you need a third opinion..just so you know, Ferns acon specialist, Dr Wallis, at great ormond street is also a respiratory medicine specialist. Knoah is very clever counting and doing his ABCs and being able to get out of that brace…bet he dose that with a cheeky look on his face:) love to you all
April 2nd, 2009
Thanks guys! They wanted to see him the 21st, but we have his ortho appointment so the 5th was the next earliest appointment. She said they also are putting us on the waitlist if someone cancels, so we maybe seeing him sooner. They never give enough info and I forgot to ask about the length of time his apnea’s are…ugh!
April 2nd, 2009
Your Knoah sure is adorable! I love the picture of him in his jammies! The look on his face and that little whisp of hair swirled up! High Five to him on doing his ABC’s and numbers! He looks so grown up in the bowling picture.
I will pray for you guys in regards to his treatment for apnea.
April 2nd, 2009
Dear Tonya! I am also keeping Knoah (and you!) in our prayers…I believe this apnea is not serious, event the central one is just what the cold machines are showing…
You will not believe this – I have an appointment with the sleep doctor (initial consult) at Yale University May 4th at 2:30!!! Oh my God, such a synchronicity…..I will be with you guys in my thoughts and heart that time…. And I will be SO EDUCATED about this sleep study that the doc will not believe….
THANKS TONYA for this education!!!! LOVE.
Kasia
April 2nd, 2009
Good luck with the course of action for Knoah’s sleep apnea! I know it is tough waiting to hear what the next step is, but we are thinking of you guys and praying that everything goes smoothly. Keep us posted on what you hear from Dr. Pauli.
What a smart cookie – finding ways to get his brace off, knowing his ABC’s, and counting backwards from 10! Way to go, Knoah!! He is growing up so fast!
I’m glad that his brace is fitting him better now, and hopefully, he is adjusting well to it!
April 2nd, 2009
Tonya! Never a dull moment with Knoah right? He is such a doll in those pjs. I cannot take it! Anyway, I have nothing to add because I have never undergone a sleep study with Preston, but I know you will get the answers you need and then educate all of us! You are our resource (no pressure or anything). I really hope they can get Knoah in sooner rather than later as the 21st seems pretty far away! Hugs!
April 3rd, 2009
Hi Tonya,
I have been reading along for awhile now, and I wanted to thank you for your efforts to educate! My son Liam is 17 month old and I’ve just started my own blog on parenting a child with achondroplasia. I hope you don’t mind but I added your blog on our bloglist.
Good luck with getting answers from the sleep study!
Best Wishes, Chelsea
April 4th, 2009
Yes he is a big boy now…. but he will always be your baby and out little Knoah
We just love the PJ’S… JUST TOO CUTE
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