"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





Wednesday, August 12, 2009

breathe...breathe....



kai beach

As you know, we celebrated my birthday last week by going to the Kai's pulmonologist/sleep doctor.

Back in March when Kai had his first episode of OSA (obstructive sleep apnea) and had his first sleep study, the results were pretty devastating. His RDI or Respiratory Distress Index (basically how many times he stops breathing per hour!) was 74.5. Yes, that night in PICU the average times that he stopped breathing in his sleep was 74.5 times per hour! Many times over 90 seconds and once over 120 seconds.

His Oxygenation Desaturation, de-sats for short, were down to the high 60's. This means that he only had 60+% of the necessary oxygen in his system. A child should never go below 94.

I was anxious to see what his results were this time, to see if the two back-to-back surgeries had been effective and to see if further intervention would be required.

The results weren't what would have made me jump for joy and skip down the halls, but they were much improved.

On July 17, he went back for his second sleep study. His RDI that night was 5.1. This translates to his body ceasing to breathe an average of 5 times per our. Still very scary (especially when the doctor reaffirmed to me that a child under 15 should be less than once an hour, if that) but a vast improvement from the prior sleep study.

His Oxygenation Desaturation only went down below normal levels once. It went down to 89, but it lasted 73 seconds. Over a minute! Still scary, but again, a vast improvement.

It was also noted that all Apnea Hypopnea (apneatic episodes) occured while on his back and throughout the entire night, not just during REM sleep which is when they had anticipated it was occuring.

So, you may be asking where do we go from here?

These were the options:

1) Go back into surgery and take down the flap to remove the final obstruction. (This may greatly affect his speech, since it would now allow air back into the nasal cavity.)

2) Have him sleep with a CPAP (continuous positive airway pressure)machine on. This option was attempted several times while in the hospital and he just couldn't tolerate it without sedation. Basically what it does is it delivers a stream of compressed air via a hose into a mask, splinting the airway (keeping it open under air pressure) so that unobstructed breathing becomes possible. They had me try it at the hospital and it was scary for me. It felt like when you are riding in a car going 60 mph and stick your head out the window. Great for dogs. Not so much for little boys.

3) Being that all of his episodes happen while he is laying on his back, configure a way to keep him on his side or on his tummy and then give him time (maybe anywhere between 1-5 years) for his body and airways to continue growing, thus enlarging the spaces of his airway passages.

The doctor's suggestion to my relief, and what I was hoping, was option # 3. He does have to be monitored by all teams of doctors (cleft, ENT and pulmonologist) every 3 months and needs to have a sleep study done every 6 months to ensure that his organs are not being affected by the interruption in his sleep/breathing cycle. His little heart is very strong and his EKG's have been perfect. Praise God!

So, while not critical, he remains under guarded watch.

It would make this Mama's heart feel good if you could please continue to keep my sweet little man in your prayers and his little airways expand large enough where breathing would no longer be an issue when he sleeps.

Any sign of congestion (as he has now!) could mean another rush to the ER and a possible option # 1. But, I'm not going there! I'm trusting God is in control and my precious treasure has a hedge of protection surrounding him, along with many angels, saints and lots of wonderful prayer warriors lifting him up!

Thank you!


13 comments :

David and Sarah said...

So glad that things are better. I'm praying that his oxygen level stays above 94%. Our son had asthma, so I know how scary it can be to have them be really low.

Blessings,
Sarah

He & Me + 3 said...

Wow...that can be scary stuff. I will keep him in my prayers.

Carmen said...

Praising God for option #3 as the others don't sound very child friendly. I know many adults given those machines (including my husband) and they use them for a month and then give up on it. Did they give you any suggestions on how to keep him from rolling on his back ?

Ohilda said...

Carmen,

Incredibly, the sophisticated suggestion for keeping him from rolling on his back is securing a tennis ball in his clothing, between his scapulas. Unfortunately, my boy is not like the Princess in the pea, he gladly rolls over and sleeps on the tennis ball all night.

I am looking to see how maybe I can purchase or my Mom can make a wedge pillow(s) sort of like the ones they use for newborns to prevent SIDS.

day by day said...

Thanking God for some improvement!!!! I know it is not as much as we would like...we will keep praying! Option 3 does sound great and I am thankful your doc likes that option best!

Terynn said...

I love option #3 and am glad the doctors thought that this was a viable option for now. Conservative measures first. Prayers for Kai's airway to GROW!!

Carmen said...

Ohilda,

He must be so exhausted that he sleeps on anything. I thought about the SIDS pillow also. Maybe stack two of them together.

RamblingMother said...

To keep him off his back sew golf balls in the tops or back pockets so that they hit his waist when he turns over in his sleep it will be just uncomfortable enough for him to turn over again off his back. It works to stop sleeping on front just the front pockets instead. Glad to know it is better and maybe he will just grow out of it.

JShannon said...

I’m happy to hear he is improving. I know someone who has sleep apnea, he only has problems while laying on his back too. He wears a foam type thing that straps around his waist. There is a large foam piece that is attached to it that sits on his lower back and prevents him from rolling onto his back. He has to sleep on his side or stomach. That may be something to look into.
He has used this method for years.

Angie said...

I am so glad that Kai improved and will pray that Option #3 is all he needs to see even greater improvement. He is such a sweetie!
Have a great trip to NY!
Angie in TX

Jill said...

We are back from vacation and I needed to pop over and see if you had Kai's results. I am glad for number three and will most certainly pray for COMPLETE healing for your sweet boy!
Love,
Jill

Sally- That Girl! said...

Great news that he has improved! Good news that you can choose option 3 and better news that we can all lift him up in prayer that God opens up those stubborn airways to give him breathing relief and mama worry relief!

Aus said...

Of course we'll keep him in our prayers - we were just talking about him last night - and so THANKS for the info! I'll e-mail you later with an adults - mine - perspective on OSA!

hugs - aus and co.

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