What Superman See's At Dinner

Sorry it's been so long since I've posted. It seems like every time we visit, the update goes something like this:

"How's he doing?"

"Good."

"Any changes?"

"Not really. He's doing well, we've weened the oxygen a little bit and__________ (insert one other small update here)."

So every night we saw progress, but it seemed very gradual. He had a couple "big" moments going from the vapotherm to the nasal canula. But now that I look back at the last post to this one, he's really majorly improved. He's down to almost nothing on the oxygen and his saturation is great. Right now he's on a quarter of a liter which is almost nothing.

We hold him pretty much every night and the latest "big" thing we've been waiting for is a swallow study to see if there were any micro aspirations with his bottle feeding. That was done yesterday morning and it didn't show the formula going into his lungs. So that was good. HOWEVER, it was a bit of a battle yesterday. We spoke with them after the test was done and they said it didn't show any micro aspirations, but that didn't rule it out either because he ate such a small amount--15cc's. Within just a couple of hours after that, one of the doctors called and recommended that we put in a g-tube for feeding that would go though his tummy straight into his stomach. I'm not crazy about him having ANOTHER operation and so I recommended to the doctor, "Why don't you just stick a bottle in his mouth instead and see if he'll eat! Or am I missing something?"

His response was, "Yeah, that's a good idea. We'll try that first." So I went to the hospital that afternoon to speak with our normal doctor as this was all getting really weird, like they were trying to push us out. I could write a novel just on everything that went on yesterday. But the bottom line is they kept saying, "can't, won't, isn't, not strong enough, etc." and I kept reminding them to say, "MAY not get it, MAY not be strong enough, but at least give him a chance."

DON'T EFFING TELL ME CAN'T WHEN YOU HAVEN'T EVEN TRIED!!!!

That made me really mad!! And one lady in particular who acts like a total know-it-all and isn't even a doctor, kept butting in on my conversation with our doctor. I finally had to tell her to shut her trap and to stop talking over me and interjecting every time I went to say something. She's gonna get a piece of my mind when this is all done!!

So we've aggressively pushed for them to put him on a feeding schedule that will increase as he proves that he can tolerate more frequency and higher quantities. But it means that more visits to the hospital. It's not REQUIRED that we are there, but it just seems like if we don't go and stay on top of it, they won't be as vigilant as we'll be and thus they won't increase quantities and decrease the time between as quickly as they should. We do have one nurse, however, that is like a third parent to Seth. She's awesome! I wish we could just clone her and have her be his only nurse all the time. She's definitely as vigilant as we are--sometimes even more so!

I'm attaching the swalllow study. I've never seen an x-ray video. I guess this is what Superman see's when he goes out to eat with others.

Today, I was told that they are preparing his discharge papers. He's still probably a week and a half away from coming home--maybe a few days less, maybe a few more, but at least we can see the light at the end of the tunnel. And a good light--not that one that dead people see.

So there's the latest. And believe me, after all the conversations yesterday, this is the truncated version!