The day after my last update, Max had his feeding tube re-inserted because he wasn’t eating enough. He needs to be able to take down a certain volume per day and was far away from that goal. Bit of a bummer but understandable.
Then he was diagnosed with thrush (warning: icky pics), which may help explain why he hasn’t been eating well. He’s been treated for that and it’s virtually gone now.
A couple days ago they removed the last of his IV’s (which was being used to both administer medication as well as provide nutrients). This was great news since it means that even though he may need to be fed via a tube in his nose, he’s getting all his sustenance through his mom’s milk now.
Yesterday they again removed the feeding tube to try to see if he would eat better. The hope was that rather than constantly filling Max’s tummy with 70 ml of milk every 3 hours on the dot, if they let him get hungry on his own and eat on his own he might eat enough via bottle. He eats a bit, but still not enough and it’s a lot of work (he’d wake up, eagerly feed for a minute or two, swallow some air, get fussy, burp, feed a bit more and then doze off and lose all interest in eating). His nurse called him stubborn. I have no idea where he got that from. Nope. No siree.
So while he’s eating a great deal more than he was (between 20 and 50 ml per feeding) it’s not enough, nor is it consistent between feedings. The result is that he’s lost a little bit of weight with the tube out, so it’s going back in and will be used to offset whatever he doesn’t eat on his own, to make sure he keeps his strength up and doesn’t get dehydrated.
The good news is that he’s recovering very well from his surgery, his respiration rate has dropped to more normal levels, he’s starting to eat like he should, and he looks awesome.
He’s just not home quite yet, and until he eats right, he won’t be. Hoping it’ll all click and he’ll start eating like a hungry baby should any day, but being realistic it could still take another week or more.
2 replies on “Update 5 – Still not home”
> I have no idea where he got that from
Ha.
Glad to hear he’s getting better dude! Hope you and Kelly are staying sane too. 🙂
Happy to see he’s doing better.
Our daughter was so stubborn during feedings I used to have to wake her up from dozing with a wet, cold washcloth. That was after stripping her down to her diaper to make her cold didn’t work. And now, she’s an almost 8 year old, very headstrong kid.
On the upside, she’s a great sleeper!