Home from getting PEG

[Phil's wife]

We are back home after an overnight stay with the PEG surgery. Everything went well and as expected. Phil is very sore but resting nicely.

I was surprised at how little information I was able to glean from everyday management of the PEG. I asked several different times and was assured the nurse would flush it before we left to show us how. Upon discharge she only brought written instructions on how to manage. I thought about pressing her to "show" us, but thought perhaps she doesn't have very much experience with it. I am hoping to see a video on youtube or even better find the Living with ALS dvd we have...last I saw it my husband put it on his desk.

Phil doesn't need it yet for eating, but told me today he would like to begin using it for medication. He still eats fairly well as long as he is selective.

Thanks,
Stephanie

 

[BarryG]

Stephanie, congrats on the new tube placement and I'm glad it went well. It was my experience too that the placement is not the problem, it is the followup from the support people who are supposed to give the care instructions where the system is a little rough. I guess it depends on where you live and the people involved but there does seem to be a need to better coordinate.

As there are a lot of us here with peg tubes, if you have any questions just ask away.

Barry

 

[flower]

Hello i am glad peg placement went so well . I received mine in may same day surg. My daughter had one (mic-key) until she was fourteen so iwas aware of the care but your right i didn't get any instruction until about 5 days when they sent a diet. Out boy was i n for a surprise i had no idea how much pain there was in the beginning but after a few weeks it was not so bad ,now its no problem. I also can wear my glasses with by-pap. I was so happy to find this site i felt so along with this thank ya'll

 

[Miss]

Hi Stephanie,

Glad the insertion of the tube went well. My husband is getting his in the middle of July. We are going to Florida for the week of the 4th, and plan to schedule it after we get home. I'll pin them down for instructions BEFORE we go in! I'm glad for the heads up!

 

[indigosd]

Stephanie, Glad to hear that the procedure went well. Mad as hell that you were not given instruction for post care! That is NOT acceptable. She needs to be reported to the quality assurance department in that facility. You are flushing it morning and night with water, right? Of course there is a lot of advice here and many people that can assist you in any way that we can. I am a RN and I am telling you that discharging someone without having them return demonstrate that they are able to do what needs to be done is inexcusable. The reason why I say for you to contact QA is that you do not want another PALS & CALS to have this same experience. Hope all is going well and that he is healing rapidly. Hugs from the Prairie. Kay Marie

 

[4mymom]

Stephanie,

My Mom had hers placed about a month and a half ago now, and we had similar experience. We left the hospital with a booklet, but no formal instruction. After we got home and she had a couple of feedings through it, it was a breeze. The nurses said it was a "simple process", but that was no excuse for not showing us the proper way either! Please feel free to ask any questions!

Chris

 

[sadiemae]

We have been using tonic water to flush ours. Remember if you have a clog, use coke, or any carbonated beverage. Flush before and after putting anything in it. Also, be careful eating too big of a meal by mouth for the first few days. HUGS Lori

 

[JeffP]

hi stepenie they did the exact thing to me and my wife handed her a booklet and that was it.they didnt even bother wheelchairing me down to the forst floor i was left walk still drowsy from the pain meds .we really have some screwed up facilitys around in this world or perhaps people that dont know what there doing well good luck he will be feeling better in no time

 

[irismarie]

Phil, do not forget all the wonderful advice from those who have gone efore. How you can swish it around to impress the girls, frighten children, etc etc.
Have fun;-)
Hope you both get used to it v v soon and that it is a real help
Much love

 

[Josall]

Phil's wife, I have had my peg for a year and a half and still eat by mouth. here are some things that helped us.

1. Flush with water twice a day.
2. If you are going crush any type of pill to put through peg check with your pharmacist to make sure you can crush.
3. I had problems with scab type build up around the peg site that would get hard and hurt or get on my shirts. Now my wife puts a little neosporin around the site with a q-tip and the cuts a 3x3 gauze pad half way and slips it around the peg and tapes the split side. The pad goes under next to the skin. No more stained shirts and its comfortable.
4. Soap and water in the shower is good.
5. You'll both be amazed (or grossed out) by the stuff in his tube,LOL!

 

[Phil's wife]

Thank you so much for everyone who has posted, we always learn so much from everyone on this site. This morning his PEG site was bleeding a little more than it had been and this was one of the first places I looked for advice. We have only been flushing once a day, and did check with the pharmacist on what we could crush, he knew everything except the Rilutek and the Avodart was a no. I would think the Rilutek is what my husband would call a "no-brainer" to crush and we are going to notify his reg doctor about an Avodart substitute. Once we have all of them tube ready we will begin using the tube for meds.

Missy, I hope you guys have a wonderful vacation and the PEG day goes well.

Since our appt, I have seen where some PEGs have a 90 degree angle instead of straight out. I wish Phil's had a 90 degree angle, it would be more comfy for him.

Thanks again everyone for the support up here!

Stephanie & Phil