Feeding fiasco

Last night, I called to check on Elliott during dinner. Nurse said got Ng tube in okay and just started formula. When did the plan change???? Nurse couldn't tell me Anything. She just kept repeating that they wanted to start trophic feeds so they start slow. She was literally incapable of understanding (or communicating in a fashion that let me know that she understood) that my issue is not with the amount, nor the contents of the feeds, but with the mode of conveyance. I am not sure the nurse and I were even having the same conversation. So, we left Mockingbird Bistro (really, really, really, really yummy, thank you for a marvelous dinner Miss Munah) and Munah drove me straight to the hospital. Still no answers. The night doc researched the issue. She couldn't find any noted justification for ceasing the feeds and placing the ng tube. She then spoke to some staff that said the day nurse "tried feeding at 530 and it didn't go well, so that's why they put in the ng tube." of course it didn't go "well," he has only fed by mouth twice (once Friday and once Monday) since his surgery, he doesn't know what he's doing! He has had no practice. Then it was suggested that the feeds are only to be done with OT present. That is not what the OT and I discussed. And feeding skills will never generalize from a 15 minute session once a day on weekdays. Really? I recognize that physicians and nurses are experts in many areas, and are not expected to be experts in feeding, but really???!

Poor thing with the tube in his nostril. He is trying like mad to pull it out. So I guess we are both pretty ticked off at this situation.

So here's where were at the end of the night: Ng tube already in and not taking out. I understood it may eventually be a possibility or likelihood. So compromise is po pedialyte by mouth every 3 hours as OT originally ordered. I'm doing feeds. He was really sleepy only took a few cc but the point at this point is not volume but practice. He will never get the skills if not allowed to practice regularly. Night shift doc agreed with me. Charge nurse gave me a RMH room so I would be there for am rounds and nightly feeds.

Enter Attending C this morning. He basically said put in ng tube yesterday to advance feeds and make progress. I said that is fine. Perhaps with the increased nutrition, Elliott will have more stamina for trials by mouth. I went back and forth a bit with him, and we compromised with trials by mouth 4 times a day with the formula. Volume would coincide with the pump. So, this morning his pump for the tube went from 5cc continuous per hour to 8cc. So, we fed Elliott 8cc. He did such a good job. See the video on facebook! For now, we are feeding over the pump, but once feeds get up to 14cc, we will stop the pump to prepare him for po feeds (so that he will get hungry and be interested). His ng feeds are being advanced by 3 cc every 6 hours to a goal of 20cc. Hopefully, he will tolerate it! No chylous effusion, buddy! If he does, then they will group his feeds (feed so much in a short time period every so many hours) instead of continuous feeding, since that is more natural.

Oh! Elliott has a terrific nurse today! She's a traveling nurse and is headed to Hopkins in Baltimore next!

I mostly videoed this morning. but here are a couple of pics

Burping. Okay so there's just one pic. But it's super duper adorable, in my totally unbiased opinion.



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