"Once our eyes are opened, we cannot pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act." Proverbs 24:12



“There are no strangers here; Only friends you haven’t yet met.”- William Butler Yeats





Thursday, October 25, 2007

My little man's upcoming challenge

Gosh, just looking at my sweet boy's face makes my bottom lip quiver thinking about what he is going to be facing in a few short weeks.

I've been asked by a few of you to elaborate a bit more on Kai's upcoming surgery, so here goes.

He is having surgery for velopharyngeal insufficiency (VPI). What is this? Velopharyngeal insufficiency is the improper closing of the velopharyngeal sphincter (soft palate muscle) during speech characterized by an acute nasal quality of the voice.

Basically, at the back of the mouth is a circle of structures that include the tonsils, the tongue, and the soft palate. During speech, this apparatus must close off the nose for proper articulation of the explosive consonants "p," "b," "g," "t," and "d." This means that too much air escapes through the nose during speech, resulting in a nasal sounding speech. This occurs because the repaired soft palate is too short or does not move adequately.

The primary symptom of VPI is the speech impediment. Some people develop a change in their speaking pattern or a series of facial grimaces to try to overcome the difficulty. If the condition is acute, regurgitation through the nose may occur. Many cleft children have "leakage" from one or both nostrils if there is an open gap where the soft palate meets the throat. Although that has been mostly remedied in Kai during his palate surgery, because the gap is still open in the back of the throat, he ocassionaly does have some leakage with foods of certain consistency.

So, what is the treatment? Velopharyngeal insufficiency is treated with a combination of surgery and speech therapy. We know that Kai will be receiving speech therapy for many years. We are hoping, praying and believing that this surgery will allow him to make those explosive consonant sounds, thus allowing him to articulate words properly. The combination of surgery to correct the insufficiency and speech therapy to retrain the voice successfully alleviate velopharyngeal insufficiency. On the average, 20-30% of children with a cleft palate end up needing VPI surgery after the initial palate closing is performed, and VPI surgery is successfull in 85-100% of all cases.

What does the surgery entail? In short, some of the tissue from the palate and the back of the throat will be repositioned in order to make a bridge that will help close off the escape of air through the nose.

Now for the scary parts. As in all surgeries, of course there are risks involved. The surgery is expected to last between 2 and 2.5 hours. There will be sutures on the back of his throat (Pharynx) that extend to the roof of his mouth. We will not be able to see these from the outside. Also, he may have some red drainage from his nose and mouth. Immediately after the operation, he may not speak due to the extreme pain. Which, speaking of pain, we have been forwarned that it is a very painful operation and he will have the "worst sore throat of his life". I know that the few times I've had a sore throat before a cold, it hurts....bad! At times, I couldn't even eat because it hurt so much to swallow. I can't even fathom the pain this baby will be feeling having tissue removed from his throat and repositioned. Again, I get choked up thinking about it. How I wish I could be the one taking that pain for him. I am just so very thankful that the Lord has allowed me to be with him during this time 24/7, as opposed to him being in an orphanage, going through this alone and having no one to love on him during that time. As usual, I digress.

We are hoping that it is only a 2 night stay at the hospital. The first night, he will be in ICU. The doctor has forwarned us that in a very few cases, children develop heavy snoring and obstructive sleep apnea. For those that are not familiar with sleep apnea, sleep apnea is a common disorder that can be very serious. In sleep apnea, your breathing stops or gets very shallow while you are sleeping. Each pause in breathing typically lasts 15 to 30 seconds or more. These pauses can occur 20 to 30 times or more an hour. This happens because the muscles that normally hold the throat open during wakefulness relax during sleep and allow it to narrow. When the throat is partially closed and/or the muscles relax too much, trying to inhale will suck the throat completely closed and air cannot pass at all. This is an obstructive sleep apnea episode. This almost always associated with a reduction in the level of oxygen in the blood.

Depending on the degree of severity, OSA is a potentially life-threatening condition. So, please, I plead that you keep my baby boy in your prayers that this condition not develop. The doctor also mentioned that on some occasions, children may have sleep apnea/loud snoring for only a few weeks and then it goes away on its own, usually in about 6 weeks. Needless to say, Kai will be sleeping with Mama for a while. :)

If he does end up with sleep apnea and we find it is severe, then he may require another surgery to correct it. The Lord wants us to ask...and believe. James 1:5-6 If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind.

Lastly, we expect to be out of town for the surgery 4 days. Due to our time in China, Kai's previous surgery and other situations, Scott has no time off left at work. We are also asking that you keep us in your prayers that everything occur in a timely fashion since there will be no income coming in during the time that Scott is not working, and as you can imagine with the adoptions and medical bills, finances are tough right now.

Sorry I know the last paragraph said "lastly", but I have a couple more final notes. First, I want to say thank you again to all of you that consistently support us, me, during this time. I know I ask for prayers often, and I know that God has heard you. I truly enjoy reading the comments/emails that I frequently receive and sometimes it is the highlight of my day. I especially have enjoy the comments and emails about the adoption remarks from strangers. You have made me laugh, cry and given me much food for thought! (On a side note....Aus, congrats on that LOA!!!!! You guys are almost there!)

And truly, this is my last remark since it is now past 2 a.m. and I know these little guys will have no mercy upon me come 6:30 a.m. when I start hearing "Mama" bellowing through the baby monitor.

When we petitioned for Kai, we had know idea of the severity of his cleft palate. God in His infinite wisdom made sure of this. But now, knowing what lies ahead, that Kai has still quite a few surgeries to face, he has many, many years of speech therapy, and will probaby have to endure some rough times during his school age years because kids can be so cruel....would I do it again? YES! YES! YES! I would bring this little boy home again a million times over and wait 100 years for him, if I had to. He is an amazing little guy who humbles me daily and am forever in thankgiving to our Lord for allowing me to call myself Kai's Mama.

6 comments :

Tammy said...

Ohilda,

Your sweet, sweet boy will be in my thoughts and prayers.



(((HUGS)))
Tammy

N & D said...

Best of luck, we will be thinking and praying of little Kai!
((hugs))
nancy

Aiden's Mommy said...

You know that you and your little sweetie pie will be in our thoughts and prayers, as will AG!

Monica said...

You are always in my thoughts and prayers. I know everything is going to be OK with sweet Kai. After all, he has YOU for a mom!!
Love,
Monica

Becky said...

O -
as always your generous and informative post fill me up. You give such and clear picture of the medical issues and you write with so much love.
I would take on your little guys pain too if I could - but know that all of you will be in my thoughts and prayers...
sending so much love -
xoxoxoxox,
B

Family4Liv said...

I know he will be very happy when this is all said and done. It is so good that you are thinking ahead and helping him to be the best he can be! He is such a handsome little guy, just adorable. Its good to see you back in blogger world.

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