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!