Where are we? That’s a good question.
What’s the next step? Also a good question.
I wish like hell I had an answer.
Let’s take his list of anomalies one by one and run through them, shall we?
Large hole (VSD) in his heart
As of now, the doctors do not believe this is causing his rapid breathing, even though that’s what the doctors told us for the first three weeks of his stay. They plan on doing another echocardiogram soon, but they say the flow of extra blood into his lungs is restrictive, and that apparently is a good sign.
Bottom line: No heart surgery in the near future.
His left cystic kidney
The right kidney is doing a bang up job taking care of all its kidney responsibilities, and so no one is even concerned about it. Aside from checking their function once a week with a blood test, the nephrologist hasn’t even come back since the first week.
Way to go, one part of his body is doing what it should!
His little hand (or his Nemo fin)
Since it doesn’t bother him, and he has full range of motion with both his arm and wrist, and his fingers all move (and try to rip out his oxygen tube just as often as his good hand), they are not concerned with it.
Well, it turns out it wasn’t a hernia. It was hernia-like, and I have no clue what that means. Whatever it was, they fixed it. He still has tape and gauze covering his stitches, but it’s healing well.
This can actually be crossed off the list now!
Aspirating his feeds
Jackson is officially a non-bottle fed baby. No matter how thick they made his formula, he was inhaling it, so that’s where the button came in. I haven’t personally administered a feed using it, but I’ve watched the nurses closely. I’ll start soon. It’s not as obtrusive on his little body as I thought it would be. I’m not happy it has to be there, but we are going to work really hard with speech therapy and working on his swallow. He will have a swallow study done every six weeks, and hopefully in the next 4-6 months, we can remove it.
His non-closing eye
They don’t think his 7th nerve is completely missing; rather, they think it may be small or immature. This means that he will probably master the blinking and closing feature in the future. It already seems to be closing more than those first few weeks. Fingers crossed!
So, that just leaves us with his fast breathing. We still don’t know why he’s doing it. We, as a family, speculate it IS the VSD, but we can’t get any doctors to agree with us.
Right now, he is currently on a small amount of oxygen, and it sounds like, barring any outside complications, that they would like to send him home next week. He would need to be off the oxygen for that, but no one seems to think that will be difficult.
The doctors are comfortable sending him home breathing fast, while Justin and I are 100% not. Not this high, when he’s constantly been in the 90-100s. If he hangs in the 50-70s, that’s one thing. Not the 100s. We took him to the ER breathing 128, and we’re going to take him home breathing the same way? How does that make sense?
Right now, it’s kind of a stalemate between us and the doctors. And, it’s the weekend, so of course nothing happens; everyone just tries to maintain the status quo of their patients until the real doctors come back during the week.
We’re still waiting. And waiting. And waiting.