Relief

SIGH.
That was a good sigh, a sigh of relief.  The kind that release loads of stress and anxiety with the exhale.
Things are going to be okay.
We have some answers, and they are answers I can handle!

In September Jayson had a couple of scopes.  His ENT scoped his upper and lower airway, and his GI scoped his upper and lower GI tract.  We didn't get great news, but we got news we can live with!

Jayson's GI tract was not in bad shape, but the biopsies later revealed that his system sustained some damage as a result of his long-lasting GI bug he battled for months!  He is on a couple of new medications that will hopefully heal his GI tract.

But for the more important news...

JAYSON DOES NOT NEED ANOTHER CRANIOFACIAL SURGERY AT THIS TIME!!!!

His airways is still a mess, that's the bad news.  But it's still his crazy epiglottis that causes his laryngomalasia AND his tonsils!!  This kid has never had tonsillitis, but the doctor was surprised to see the size of his tonsils!  He said that surgically treating the laryngomalasia again is a little too complex right now and may not give us the results we want.  BUT the tonsils need to go, and that's an easy fix!  We were scheduled to have a sleep study the following week, and when I asked him if we should keep the appointment he laughed and said, "NO! No way.  He would completely fail right now.  His airway is a mess."  That really helped me see the seriousness of his airway.  This could be why he's been desatting, even on bipap!  This could be why his airway looks so small to docs who see it.  This can be fixed somewhat easily, hopefully.  I felt hopeful again.

So we scheduled surgery, and quick.  A week later, Little J had his tonsils removed.  He stayed overnight as a precaution since he's a complex little boy, but he did not have any trouble!  Pain was easily managed; no excess bleeding; no concerns.  That rarely happens!! I was elated!!

He had a good couple of days at home too.  We are all pleasantly surprised.  But as usual, days 5-10 were a nightmare.  Little J was so sad and in pain.  It was really tough to endure, but it was all typical for the recovery.  He didn't require any additional doctors appointments, hospital visits or emergency phone calls.  We were able to manage everything at home!  It's times like these I am ridiculously grateful for his feeding tube!!  I think it helped him have an easier recovery than some!

It's been a couple of months now since his surgery and we are already seeing the benefits!  It's weird... our pulse ox isn't alarming all night.  Our child isn't waking us with sounds of him fighting the bipap or gasping for air.  It's amazing!  He sleeps, he breathes, and all is well.  We feel so grateful that this simple surgery was able to help him so much.