Resuming drinking/eating after PEG placement

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New member
Aug 18, 2011
Hey all,

Never posted here before although I haunt these posts all the time. My husband is a former U.S. Marine diagnosed with ALS in August of 2011 at the age of 28. He is still talking and walking around our accessible house with the help of a walker, and he still eats and drinks although he is starting to lose some weight.

Today he had diaphragm pacers and a PEG placed.

For those of you who have seen or had PEG's placed, please tell me how soon after placement you were able to sip water or liquid.

Thanks for your input. Today was tough, but it's a relief to have the surgery over and hopefully to be able to go home tomorrow.

I don't know if it is the same for you, we were kept in hospital overnight after the peg placement.

He was nil intake for 4 hours. Then water flush of 50ml every hour for 4 hours (to check that he tolerated it and no leaking). Then his first full peg feed after that.

He wasn't allowed to eat that first day at all.

Might at least give you a guide, though they really should have given you clear instructions!

My husband had the peg inserted in October. He still eats a little puree, but really his nutrition is now by peg, the puree and thickened coffee is for pleasure.

He has found he feels less nauseous if he eats something, then waits 10 minutes or so and then has the peg feed.

Hope this helps, welcome to joining in with us :)
Actually I just realised that you are saying you are still in the hospital? Aren't they telling you what he can or can't have and when?
My husband is also a vet and had his PEG tube put in Nov/13. He was not allowed anything by mouth the day of the procedure, and only fluids the next day. But he did not have a diaphragm pacer put in, so it may be different for your husband. They must make sure that he has bowel sounds before he can start fluids, and as Tillie said they should be informing you of all of this. If they are not, please ask them to. You will have to advocate for your husband, and be very assertive. They gave my husband a binder with all the things he needed to know, and it is to go with him each time he goes into hospital at the VA. It has the power of attorney, and his living will in it. Keep a journal of what they talked to you about, and what doctors or medical personnel that is involved with your husband, what they told you, and the things that they did for him each day. It can all be very overwhelming and it helps to keep track of things. Keep us updated on how your husband is doing. I am sorry that you both have to go through this at such a young age, and my prayers will be with you.

Thank you for the responses.

We are in the hospital now. He's been suffering a lot and I wish we could give him some kind of nutrition. They have finally allowed his Baclofen through the PEG (after I became quite "assertive"-- we actually had a doctor apologize to him, which I found pretty amazing). He was having withdrawal symptoms and after I had vocalized repeated requests to doctors and nurses throughout the ward, I was able to convince them it was necessary. I was afraid of a seizure. We are having an out-of-VA procedure done, which has been interesting in terms of waiting for approvals, getting pre-operative tests performed, getting pre-operative test results communicated, etc. But also interesting as I have realized just how much hospitals are not equipped to deal with ALS. I guess the best tactic for health is still to stay out of the hospital! ;-)

He awoke from surgery flat on his back with oxygen but no ventilator, panicked but could not vocalize the problem due to the sedatives used in anesthesia, and he has been suffering badly since we started the GoLytely two days ago. First with stomach cramps, hunger, nausea, and anxiety, now with pain and muscle spasms. It breaks my heart. He is supposed to be released today. I'm a little intimidated to take him home in so much pain, but we will manage as we always do.

Thanks for the responses and support. Looks like the doctors' reluctance to medicate via the PEG on the first day was not out-of-the-ordinary. Maybe we should have had a better plan in place to deal with the intense muscle spasms.

It sure can be scary having your PALS in a hospital.

For the most part I insist on being with him. The endoscopy day centre here allow me to come in for everything except the actual procedure. They let me back in as soon as he comes out even before he wakes fully.

I explain to every nurse and doctor I can talk to what his special needs and issues are, and so far (we have been in there 2 times and are back next week for a button change, but that's another thread entirely) they appreciate what I tell them.

I say things like - because he is bulbar onset, he drools a lot, can't control his tongue, can gag and choke on saliva alone. He has jaw clonus, his jaw can clamp shut, and his palate hangs too low in his throat so if you lay him flat he will panic as he can't breathe. If you understand all of this it will help you when you go to do the mouth guard and give the anaesthetic you will know what just happens to him all the time compared to what is happening in response to what you are doing.

When I took my husband in for the initial peg placement, I told them how little he had been drinking for weeks and they immediately said - would you like us to put a drip in? I said perfect, yes he is dehydrated now. Then they also gave him any medications through the IV line.

Maybe they could set up a drip for you?
We found even on a rehab floor that deals with recovering stroke, MS,and ALS patients, that they had a lot of difficulty dealing with the slings, and toileting someone who is unable to sit up on their own. Thankfully my husband doesn't have problems with cramping so we didn't have to deal with that. Also being a nurse, I was able to suggest alternatives to some of their bowel preps, and technics to inserting the NG tube prior to the procedure. I can't imagine how intimidating it is for a lay person CALS. We were sent home with new equipment, that even their techs didm't know how to use, and I just had to get on line and check the sites of the distributors of that equipment. I also got a lot of help from individuals on this forum on some of the equipment, who deal with it 24/7 for months to years, which I am so incredibly thankful for.
You are absolutely correct in saying, that it is best to keep them out of the hospital if you can. It is so much easier for us when we are at home in our environment, with our food, and no superbugs to contend with. If you have any questions, ask, and if you just need to vent come here and we will listen.
My husband had a peg tube placed 6 years ago. Don't be frustrated if the first food they give you for it upsets his stomach. The more he can move around, the better his digestion will be. If he doesn't adjust, there are many foods out there.
When you bring home the equipment, make sure you have someone or some # to call if you have problems or forget how to set something up.
Good luck to you. The area will be sore around it for a while, and it is good to know where it is before you transfer.
I hope this helps for you and him. You may want to buy a pill crusher too so if he can't swallow, you can put it thru the tube.
Just wanted to write a quick update and tell you all that he is home and eating and drinking just fine! We learned a lot from this experience. It is so important to explain the individual patient's needs to those that will be caring for him/her, and that will go far in the future for helping to avoid bad experiences. The hospital was fully aware of his need for Baclofen and to not be flat, however it was not communicated to those who would be caring for him. All of the nurses we dealt with were extremely helpful and caring. I wish I had more of a medical background. Being present in the hospital with Mike to act as his advocate and voice was such a good thing even if we didn't realize just how far we would have to troubleshoot.

BTW-- I am quite pleased with the tube. It's very cool to not have to pressure him to eat anymore. Our surgeon and doctor have encouraged us in regards to making our own tube food. We fired up the pacers today, and while the sensation is strange for him, I am sure in time he will get used to it.

Thanks again for the support!

thanks for the update, I'm so glad you are up and running with the peg now :)

When my PALS is in a hospital I make signs or if they have a whiteboard I have a pen with me for it.

I write things like - DO NOT pull on my arms, I can't talk well but I can hear and understand you, My hands don't work very well please help me. They don't all read it, but it does help a little as I can't be in there 24/7 with him, but have someone with him as much as possible.
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