TPN and ketogenic diet?

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What is that?
We live in scandinavia now, so I might not know of everything in the USA/Canada/Australia/what_have_you.
Anyone I can email on this subject is great.

Thanks for the link! I'm going to mail them and join the board.

She is aspirating to her lungs again, she did before the gtube, and then it was very much resolved with the tube, but now it's back. Probably from a thing called volume-reflux here.
She also has malabsorption, the tests haven't told us much, but the last blood draw was clearer on that, and the symptoms are pretty obv.
And since she has done so well on TPN earlier, her doc thought we should go that route. She really can't have more than one operation (and hardly one), so it's also a issue of which one is "safer"/more likely to be a guaranteed fix/work, IYKWIM. If we do a GJ-tube, and it doesn't work, she might not be able to have another operation to get the CVC. And with her malabsorption issues, well, the TPN is probably safer that way.
I'm not sure yet. I've thought of the GJ-tube bc of the ketogenic and asked the doc and that's when he made those points over here.
I guess I'm still hoping there's a way for her to be on the diet on TPN.
The doc also said we could try to decrease her fat % and increase her carb % now, to see how she responds, before we do anything invasive. It just needs to happen rather quickly. So, we decided we'd try that, just a tiny bit for now, baby steps.
She was put on gaviscon now for the aspirating, we'll see if that works while we try to figure this out quickly.

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Uh, really?
I'm not sure our docs here do that, I have to look into it. The doc clearly said anesthesia and operation in both cases. Maybe our hospital doesn't offer it that way, I have no clue. It doesn't hurt at all?
I'm not sure it would work with the malabsorption issue yet, our doc was going to conference with the team tomorrow about all these issues that we talked about today. I'll mail him right now about what you said here.

the GJ goes into the existing G tube stoma. There's not a seperate stoma in the jejunum. Here's what the button version looks like.

This is what the button version looks like in Linden. Don't mind the leakage, we had an issue with that so we switched to a long GJ tube...

And here's what the long GJ looks like in Linden. The part inside him looks identical to the button version.

It's not the most comfortable proceedure, but it doesn't hurt him. The only time it hurt was the first time cause they have to dilate them from a 14 french to a 16 french.

There is no surgery involved and we have never used any kind of drugs for the proceedure. As long as the long part of the tube stays in place like it should it works just the same way as a seperate J tube. Around here they only do the seperate J tube if the GJ won't stay in place and as a last resort. There is so much less risk with the GJ instead.

It might not do anything for the malabsorption, but you can maybe put more through it since she shouldn't have reflux with it. If she still has problems with stomach contents, you can put her stomach to drain with a farrel valve bag. That way her stomach stays totally empty.

It's totally worth asking about. And supposedly if you do J feeds with TPN and you get 30% of the calories or more through enteral feeds, you greatly reduce the risk of liver damage from the TPN. So it might be worth doing in conjunction with TPN if you go that route too. It just reduces the risks further even though she did okay with it before. That way you can use the TPN as a longer term solution but not have to worry as much about liver failure. Plus that way she would still be getting adequate nutrition with the TPN but still using the gut so it doesn't shut down.

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Oh, and I think I'm having a blond moment here. But, the first picture is the GJ tube? But it looks like a regular gtube with an extension only, is that the whole GJ tube?
And what is that on the last picture then? That looks like the PEG we had before we changed to the gtube a few weeks after the operation. (And that was really annoying, I was so happy when we got the gtube.)
Or is this two different versions of a GJ tube? A button and a long version, or something? And what's the difference? Did you choose?
Sorry if this is stupid.

This could get confusing, so if you have any questions, just ask.

The farrell bag is a bag with a special valve at the top that lets gas out but not liquid.
Hanging on Linden's back pack.

Here is a picture of the gas relief valve thing. That is what the farrell valve is.

Please disregard the stomach goo, sorry about that. It has two clamps. You can open both and have flow both ways. Or you cna clamp the one to the bag and nothing can go into or out of the farrell bag, but the feed can still go through the Y port connector. If you clamp it from the stomach to the y-port, nothing can go in or out and it's totally clamped off. If you want to take a feed out of the port, clamp both so nothing leaks while not attached.

Here is a close up of the y-port.

There are a few different ways you can hook it up if you have a GJ tube, but only one way to hook it up for a G-tube. For a G-tube you'd just hook the orange adaptor end into the extension and then put the feed through the y-port on the farrell bag.

For GJ tube, you can either hook the feed up to the y-port for a g feed and decompression at the same time. or you can hook the feed up to the J port on the actual feeding tube and connect the farrell bag into the other port (the G port) on the feeding tube. This way you can do a J feed and decompress the stomach at the same time.

If the bag is below the stomach (like on the floor) the stomach will drain and nothing will go back in.

If the bag is at the same level as the stomach the extra volume that the stomach doesn't handle easily will go out but will very slowly go back in but the gas will go out the farrell valve.

If the bag is hung on an IV pole, the gas and some very pressurized stomach contents will go into the back but will fairly quickly drain back in if the stomach can handle it. The gas will go out the farrell valve and not back in.

So if you wanted to make sure the stomach was always empty you would feed through the J port and hook the farrell bag up to the g port. You'd then make sure the bag was on the floor well below the stomach. Nothing would go back into the stomach.

If you you just want to vent during a feed but it is tolerated fairly well, you'd hang the bag on the IV pole and what was tolerated would go back in fairly fast but all the gas would come out.

If you want to make sure that anything that is slightly over pressurized comes out, you hang the bag a little over the stomach height. The feed can take forever to go back in, but you won't have reflux since it "refluxes" into the bag instead of out the mouth.

We put Linden's stomach to drain at night (so farrell bag on the floor). During the day I don't hook him up till he starts refluxing or having pain. I adjust the height of the bag on the IV pole (lower goes slower) based on how well he's doing. If he has a lot of pain like today, we hook the farrell bag to the outside of his back pack or onto a baby doll stroller that he uses to push his feed around. Once he is more comfortable, I give him a while and then start slowly raising the height of the bag. If he starts having more pain or reflux, I lower the bag a bit till he's okay.

It's pretty neat to see how much or how little comes out. Sometimes a whole feed will come out and just stay there for a while then suddenly it'll start going back in really fast. I have no idea why he does this. Other times just a bit comes into the bag and stays at about that level for the whole feed. His motility seems to vary quite a lot.

If you have any other questions or want any other pictures, just let me know. I really like the farrell bag because it can be used so many different ways based on how he's doing at that exact moment.

MotherWhimsey, I think I love you a bit!
Thanks a bunch, that is awesome, I had to mail our doc again now and ask if we have this bag her (I supose we do), and ask why the heck we don't have one. So, I guess we'll be getting that soon, since it can be used with the gtube too.
We're meeting him again on monday to decide what we do next, both him and us needed to gather some info. Actually we're meeting the whole team then, and that is a lot of people. So that'll be interesting.

I saw the Mito video and a whole bunch of other videos on youtube of your kids btw, they are beautiful!

(Og, and if you have the time to read our introduction and see if you have any input on the Mito part there, that would be great. Mito is still on the list of "could be's".)