I'm really annoyed at the hospital right now. Seth has been doing relatively well with his feedings and the orders were changed to basically an all-you-can-eat buffet in a half hour. He needs to be up to 72 cc's in 30 minutes to avoid the g-tube. So Janice and I really started to make an effort to be at as many feedings as possible to make sure he's eating as much as he can.
So Friday night I was there for the 8:30 feeding. We had a nurse we don't normally have. She's really nice though and we do like her. She fed Seth and I had my timer going. At 27 minutes she stopped and deemed Seth to be too tired to continue. Bull! He had taken 24 cc's. She asked if I wanted to hold him and I said, yeah, I want to hold him cause I'm gonna finish the feeding. He's not done yet. So I fed him for what ended up being the last minute and a half by the time he was transitioned. He ate another 8 cc's in that just-under-two minutes. Honestly, I was TICKED!! He had just eaten an additional 30% more than she had fed him!!!
So I left shortly after that and stewed on it for the next couple of hours. Realizing that the staff wasn't giving it 100%, I went back at 11:30 for his next feeding. I walked in and the conversation went something like this:
ALEX: Is this his 11:30 bottle?
NURSE: Yes.
ALEX: Good, cause I'm feeding him.
I sat down and started to feed him and the conversation continued:
NURSE: I sense there's something wrong.
ALEX: Yeah, there's something wrong. We've had a gun put to our heads that he has to eat 72 cc's in 30 minutes or he goes under the knife--and you're not feeding him for the full thirty.
NURSE: I fed him for thirty minutes.
ALEX: NO YOU DIDN'T! I TIMED IT AND I CAN TELL YOU TO THE EXACT SECOND WHEN YOU STOPPED. HE HAD 3 MINUTES LEFT AND ATE ANOTHER 30% MORE WHEN I TOOK OVER FOR THAT LAST TWO MINUTES!
NURSE: Well, if you want another nurse for the rest of the night, that's fine with me.
ALEX: No, we really like you, and think you're a great nurse. We just want him to eat for the full 30.
And she walked away. At that feeding, I fed him 51 cc's in EXACTLY 30 minutes.
Needless to say, I guess this sort of turned into the NICU soap opera story for the next 24+ hours or so. It seems like every doctor or nurse I talked to brought this up.
Oh yeah, I forgot to mention the part about them calling Janice on Friday afternoon and saying, "We've scheduled the scope test on Monday and we'll do the g-tube at the same time. But only if you're okay with it." I think what makes me the most mad about this is that they've scheduled it without asking. They just did it and then asked. Granted we have an out, but the approach was horribly tactless in my opinion.
AND the worst part is after I held the nurse's feet to the fire about feeding for a solid 30 minutes, they changed the order and said, "Well, now let's just feed him until he's done."
No time limit basically gives the nurses an out to say, "Oh, he's tired," letting them stop whenever they want. It seems like they just keep changing the parameters so that they win and Seth is forced into a g-tube.
Ultimately, a g-tube MAY be the best thing for him. But they should've given him more time. They didn't think he could get to the capacity he needed feeding only by mouth. We disagree, but they're not giving him a fair shake. They're forgetting that not only is he a miracle baby, he's half Samoan.
SO at this point, we've finally conceded. It obviously doesn't matter what we do. They're just going to keep changing the rules on us until they get their way. And the worst part is that they're doing the scope test on Monday, and it's just another couple of steps to insert the g-tube. So if he's ultimately going to need one, it doesn't make sense to wait and make Seth have two similar, separate procedures. So they win, I guess. I'm pissed about the way this whole situation has been handled. And if ANYTHING happens to Seth, there are a couple dozen lawyers on my office floor and I will OWN Torrance Memorial Hospital after I'm done suing the pants off of them.
So it feels like it's becoming an us against them. We've been warned that this would happen and have been told by everyone to fight for him. So that's what we continue to do as best as we can. The one benefit of the g-tube is that he'll get out sooner. So we'll see what happens after tomorrow.
On a lighter note, Lex and Spencer are both OBSESSED with the backlot tour at Universal Studios. I couldn't be more proud!!
Like sands through the hourglass, so are the days of our lives.
I know the last thing you guys want for little Seth is another surgery. There's nothing worse than being pressured into something. We fought against the g-tube ourselves for many years so I know what you're going through. The good news is you are learning a lesson that you will need throughout Seth's life. You are his only real advocate and you will need to advocate for him continuously to see that he gets what he needs wherever he goes. That's what moms and dads are good for!
ReplyDeleteChristine K.
What a battle. It's a battle of parent's intuition and then knowing when to concede to a medical decision. SO hard. You have been in the battle much longer than we were. AND truly some things ARE necessary. But I am also a big believer in intuition. I still get a little fired up when I remember the battle with fortifying Jordyn's feedings. They would start her feedings and then as soon as she was up to 30 cc's, her stomach would get distended and they would STOP her feedings for a few days. It was so horrible. (She was getting breastmilk fortified with strong formula for more nutrition). I kept feeling like she was having a reaction to the formula, like a lactose intolerance to it. So after this happened like four times within a couple weeks, I more forcefully said "I do NOT want you to give her any more fortifier...just straight breastmilk". And the nurses said I'd have to talk to the practiioner, who had to talk to the doctor and they basically told me that it wouldn't give her enough nutrition, they didn't agree with it, but that they'd go ahead and try it.
ReplyDeleteWell...long story short, she came home 5 days later :-) I was right.
(BTW, he is a cutie!!)
Well, a g-tube is reversible later. At least he can get home and when he gets his weight up and feeding, you can discontinue it. It's been a good thing for Ky. If she gets sick and won't eat, at least we know she is getting nutrition. She was skin and bones before the g-tube. She looks fantastic now. He can still have milk by mouth, too. Keep on keeping on.Still paying for him to be home t-giving.
ReplyDeleteUltimately the decision is yours. Remember you are an important part of the healthcare team. What you think is best is as important as what the doctor or nurses think is best. Don't forget that! I hope all goes well! He is looking sooo great!
ReplyDelete