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dianepage

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My spouse has decided to go for the feeding tube -- his FVC dropped from 87 to 45 between May and October and ALS clinic folks said to make a quick decision. Our social worker gave us the name of an interventional radiologist. The doc requires an abdominal CT prior to the procedure, and we have an order for one -- but how on earth is my sweetie going to lie on his back for the scan when he normally sits up, props up with pillows in order to breathe? We'll ask when we make the appointment, but based on prior experience with "routine" medical care providers, I don't expect the scan office will have any bright ideas about how to manage this for an ALS patient with very limited mobility and reduced lung function. Has anyone else done a scan and how did it go?
 

zoohouse

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My husband is going for his feeding tube tomorrow, also done by an interventional radiologist, but does not require a CT. He was given barium tonight which will show them where his bowels are, and they will insert an NG tube to inflate his stomach with air making it larger and pushes the bowels out of the way. Tools that are radio opaque will be used to do the procedure while they do xrays to visualize where they are at.
If it is a pre procedure CT then maybe he can use a bipap during the procedure to assist in his breathing. Tim is feeling a bit apprehensive, but I promised I will be there with him. This is considered the safest method of inserting a gastric tube. They also use opiods which decrease the heart load, and relaxes his a bit. Our thoughts will be with you.

Paulette
 

bowser

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Perhaps newly diagnosed ALS people will realize that saying............" I will have a PEG installed, but not now. I will do it when I need it "..................has consequences and might prevent you from doing so.
 

affected

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@dianepage - hopefully zoohouse has given a good way to get the procedure done.

When my PALS went in to the theatre to have his peg put in recently he began to panic when they lay him down and tried to get the mouthguard in. Fortunately they had been professional enough to listen to me describe his bulbar issues to them, and they handled it so well and got him through it.

Afterwards he asked to speak to the anaesthetist and cried as he thanked him for his kindness in there.

But your concerns are valid, though they will be there ready to intubate him if needed, but it causes such panic for them, so talk to everyone in the team you can to get him the best care.

@zoohouse - how did your PALS go?
 

zoohouse

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Tim came through the procedure well, and said the worst part was the NG tube they put down his nose to inflate his stomach. I believe his nose is his achille's tendon as he hates anyone or anything messing with his nose. The site looks great, with very little bleeding, and the nurse and I were informed by him that we were not to talk about the "blood, drainage, seeping or anything yucky around him, he didn't want to know." The one thing that might prove a bit difficult, is him having a good BM and getting rid of the barium that he had to drink. He didn't go at all yesterday, and did finally have one today, but it exhausted him.
Will be staying until after Monday, as his BiPap is not behaving, and we are trying to get a mask, other than the nose pillows that will work, in case his skin breaks down. He says, that he likes the "PEG" tube, as anytime he needs to take a terrible tasting medicine, we can just use the tube. Otherwise we just flush it a couple of times a day.
 

affected

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great news for you and Tim!

It's a snap to use and we affectionately call it 'peggy sue' and have written a few funny versions of the old song for a laugh.
 

lgelb

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Try Remzzz liners for skin breakdown/leak w/ any type of mask. We also use nonstick pads w/ cushioned tape on the sites that suffer the most from mask and/or pillow abrasion.
 

dianepage

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So glad to hear that things went well for you all, zoohouse! Are you going to "try out" formula or blended food before you have to? I think we will do both food-by-mouth and some supplement right away to keep Fred's weight up. It does take him a long time to eat small meals and snacks throughout the day, although our major urgency came from his loss of breathing capability. We had no idea it had deteriorated so much between 3 month clinic visits; now we are using my peak flow meter at home to be more activist about monitoring. He does not feel particulary short of breath, so his most recent test results were a shocker.
 

zoohouse

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Tim is not going to try formulas yet, as he eats as fast as I do. No difficult chewing or swallowing, so he's got that going for him. His FVC went from 75% in July to 37% this November, so we know what you are going through. It caught us by surprise as well, and that is why he is at the VA in Seattle. Still having some trouble with the new ResMed VPAP, where it gives him 3 good breaths and then delays the next 3. The RT that set it up for us doesn't know why it is doing that. I don't want to take him home until that is all figured out.
 
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