Nolan's g-tube and overnight feeds have done amazing things for him. He is now 41 pounds, 43" tall, and in the 37th percentile for weight. He no longer has growth failure, is stronger, healthier, and sturdier.
His C-Pap, however, offers variable performance for him. We sometimes hear stridor over the mask, which means the machine can't quite keep his oxygen consistently high. We reviewed the video from Nolan's sleep laryngoscopy, which shows the floppy tissue collapsing over his voice box.
Our ENT believes the first supraglottoplasty failed due to uncontrolled acid reflux. Now that Nolan has a fundoplication, the acid should be under control and a second supraglottoplasty has a higher chance of success. To maximize the chances for success, Nolan will be intubated and ventilated (while under sedation) in the Pediatric ICU for 48 hours.
Surgery has been scheduled for February 26th.
Next Tuesday.
There has been a whirlwind of activity since the appointment on Monday. We do not have local family, so we are extremely blessed to have amazing friends who will take care of Matthew while Nolan is in the hospital. I have called and booked a dog kennel for Casey. I have called the anesthesiology group to verify they participate with our insurance company (they do). I have taken care of the up-front deposit required for surgery, and moved a vet appointment and canceled Nolan's sleep neurologist appointment.
I am hopeful that Nolan will be released on Friday morning (March 1), but everything depends on how Nolan does after he is extubated and on room air.
If the surgery is successful, we can ditch the C-Pap. It would be really, really wonderful to ditch the C-Pap.
Nolan will have a follow-up (post-op) appointment on March 18, just 3 days before Matt's surgery.
3 comments:
So quick!! I'm really hoping this one will be successful for him!
We'll be praying for him :D
Julie
I will certainly keep you all in my prayers! Hopefully he will have a speedy recovery!
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