So this is what a miracle looks like

Thanks for all your prayers.
The sleep and feeding study results were far better than anyone expected.

Drew was able to breathe quite well on his own without the ventilator for most of the night! He still showed a few periods of shallow breathing but none of the major apneas that were frequent in his initial study. So he's a B-grade breather with room for improvement.
His swallowing was also greatly improved. There was no aspiration and only one event in which a small amount of liquid went part way down his airway but not all the way to his lungs. No G-tube for us!!

This really is a miracle. When initial investigations into Drew's breathing showed that this was a central nervous system problem we knew that this meant it was not something he would grow out of, and yet here he is at only 3 months surprising everyone and giving us hope that he may continue to improve.

Despite this we are still in the hospital. While Drew is mastering the art of breathing-while-sleeping and breathing-while-eating, he is deteriorating in the field of breathing-while-mad. His breath-holding episodes have gotten a lot worse in both frequency and severity in the last few weeks. While we are used to them, they make the Drs very uncomfortable. They are hesitant to send us home with him being so dramatic on such a regular basis.

So what does the future look like? Right now we take it day by day with very conservative management; sticking with the ventilator for sleeping and the NG tube for most of his feeding. No one wants to push Drew on these things as he needs all his reserves to recover from his breath-holding episodes. A bunch of specialists have ordered a whack of investigations but they remain skeptical that they will be able to diagnose the cause and will probably try some medications on a "might-as-well-try-it, maybe-it'll-work" basis. They want to keep Drew under close observation while they give them a try, so he will remain in the hospital for at least a few more days.

In the meanwhile Drew keeps everyone hopping with breath-holding that freaks out each new Dr that sees it for the first time. This morning he decided to mix it up a little by dislodging his tracheostomy tube and requiring an emergency tube replacement. Mommy is still shaking.

So please keep praying.
We are spent.

kb