PEG scheduled

[indigosd]

Web is scheduled for his PEG on 15 December. I feel :cry: and I feel :-) He does too. It will help so much but...still sad about all the changes. So does everyone get the long one first and then get switched to a shorter one that can be replaced? You would think that I would know but I can't remember. Any suggestions on what to look for or ask for-one type versus another?? Thanks.

[BethU]

I think, once it's in, you'll both be :-)

I'm not sure how it works ... it probably depends on the doctor. My first (long) one had a clamp, and it was easier to use than the little shortie I have now. (Easier to hide, too.)

[DgtofTNfan]

Good Luck to you guys on the 15th. I know you will both be :smile: to have it over with.
Dana

[Erica]

Good luck!!! I'll be thinking of both of you on Dec 15th.Erica

[brooksea]

Can't answer your question, but sending luck you and your husband! Please let us know how it goes when the time comes!

[BarryG]

Kay Marie, count me in the long tube first tube group. Like Beth, I think that it is the choice of the doctor who puts it in. Maybe the initial ones are put in because they are the easiest for our bodies to adapt to? I am still on my first tube after 9 months and my ALS doctor told me that they try to get a year out of the first one so I am probably ok for a bit yet.

I would be interested in knowing what they tell you if you ask. Not that I regret having my peg, whatever kind it is, it has meant so much to my well being and I know it will for Web too. It is a very visible (but hidden, if that makes any sense) symbol of the changes that are happening to us, that we are not the same as we were. But that aside, I will use anything that makes my life easier, including a food hose.

Good luck and keep us posted.

Barry

[indigosd]

OMG-I am so twisted!! When I saw this "count me in the long tube first tube group." all I could think of was...OMG! Web will love being a member of this group!!

[indigosd]

Barry, I am tempted to go and buy a magnifying glass so that I can truly appreciate and drool over your new avi! Can you see mine? I tried to change it but I can't see it myself.

[GlenBrittle]

Well, I asked my surgeon about a mic-key and she looked at my tube and told me I was too big.

Ya, but what about the feeding tube? I thought to myself

It seems that she can only get the mic-key up to a 4.5 cm length. Currently , my long tube is between 5.5 and 6 cm.

So , unless I want to walk around like Beth with a 14 yr old woody , I will be sticking withe the long tube.

[BarryG]

indigosd, we are all at least a little bit twisted here, but I never even dreamed that my "long tube first tube" comment could be bent that way! Maybe I should have said "long tube second tube". I will just not say anymore on that except to say that "size does matter" at least when it comes to peg tubes. ;-);-)

I don't see your avatar so maybe give it another try, I am excited to see what you ""look like".

[joelc]

Glen, consider this tube

We ended up getting a KC MIC Gastrostomy Feeding tube 0100-20.
This tube has been great, no problems or clogs. Also the tube is short so I don't have to worry about it as it does not get in the way and we don't have to tape it up to hold it.

533

[indigosd]

Joel, did you get this first? I am going to ask if Web can get this! Tussen tak :] Glen and Barry, I just love you guys-you are so twisted and funny!! Web would love the 14 year old woody look!

[joelc]

The first tube everyone gets has a bell on the inside, to hold it in your stomach. It also has quite a long tube which has to be dealt with, usually by taping it to your stomach.

Once the stoma has healed sufficiently, usually 6 weeks, there are choices for replacement, although this tube can last up to 2 years. A doctor has to remove this initial tube and install the replacement. After that you can change it yourself at home.

[hopeful warrior]

Wow! Greg is being horribly obnoxious about being a member of the "long tube" club. I'll never hear the end of it!
He got his PEG in May of this year. The doctor has not ever said a thing about getting a different tube.

I think you will be smiling afterwards, too. Things are so much easier for both of you. It is also such a blessing to be able to cross "suffering while eating" and choking off your list.

[indigosd]

Counting down the minutes and will be soul happy to cross those 2 off our list!!

[GlenBrittle]

Glen, consider this tube

We ended up getting a KC MIC Gastrostomy Feeding tube 0100-20.
This tube has been great, no problems or clogs. Also the tube is short so I don't have to worry about it as it does not get in the way and we don't have to tape it up to hold it.

533

Joel , thanks for the info.

Kay, tick tock ... is it in yet ?

Glen

[jewel]

any size tube is better then none. i've had one for 5 0r 6 years. however hot and cold food and drinks, i can still manage on good days. correction. hot pureed food and thick frozen drinks

[indigosd]

On the countdown-18 days before he becomes a member to the PEG Club. I just read Deborah's post and it made me a tad anxious...sure hope she is better today! Joel, I have copied the information and will definately make a inquiry about having this tube when it is time appropriate. Jewel, WOW dx'd since 02! CONGRATS and what is the secret? You and Joel are our inspiration! Glen, I love your signature tag! lol I actually had to have a word with Web about that very same thing! lol Barry, I so miss your eye candy avi :[ not that this one isn't cute...but the other one was eye candy!

[indigosd]

oh, forgot to ask Joel this, could you put the information on this tube in the "tips and hints" thread? Or do you want me to copy it there? I like it when I can go to one place for information about something instead of bookmarking or searching. :] Just a thought.

[BethU]

About my first (long) tube: Mine had what the doctor described as something like a Molly bolt or a little umbrella inside it, which opened after he inserted it. That meant an "ouch" when he pulled it out, but it was only momentary. It actually looked like a flexible little mushroom cap, about the size of a quarter.

My current (short) one has a balloon inside, which I can feel like a hard rubber ball. It also has a disk on the outside, which keeps the opening moist and yukky, so I have to keep gauze dressing on it to absorb the moisture and the gunk, and it's a pain to keep changing the gauze and taping it down, etc. When they remove this (if they do), they will simply deflate the balloon and pull it out, but I imagine there will be the same little ouch. I don't know why (the size of the balloon?) but I can't take in as much fluid with the short one as I could before, and have lost 5 to 7 pounds in the month since the replacement.

And it still sticks out, making a very noticeable bulge in anything I wear. I'm going to start wearing a sign, "No that's not a banana in my pocket, I'm just glad to see you."

The long tube (with a handy clamp) had none of those problems and the opening remained dry and clean at all times. Plus which, you couldn't see it under your clothing.

[indigosd]

hmmmm....so Beth, the long tube with the clamp was better for you. I hate to hear that you have lost weight! Have you phoned the Dr.? Maybe you need to have the long one back? Joel, do you have any issues similar to Beth with yours? I am glad that I have 18 days left, I might have all my questions answered by then! Thank you Beth and please get that checked asap!

[joelc]

hmmmm....so Beth, the long tube with the clamp was better for you. I hate to hear that you have lost weight! Have you phoned the Dr.? Maybe you need to have the long one back? Joel, do you have any issues similar to Beth with yours? I am glad that I have 18 days left, I might have all my questions answered by then! Thank you Beth and please get that checked asap!

No, I don't have the issues Beth has had. I am quite baffled by what she has said.

[KeeKer]

Beth, can you get the long one back? I would really suggest that you get a hold of your dr. and demand it.(I know that will be hard for you)lol

[joelc]

They can and will install one like the original. The doctor has to do this, this type cannot be done by you at home. The advantage is that they last up to 2 years before needing to be replaced and they don't suffer from the problems the ones with inflatable balloons do.

It might be a good choice.

[BarryG]

Just speculating here but would another operation (endoscopy) be required to put the original type back in?

I agree that anything that we have to use should be as easy to use and live with as possible and I don't understand why a replacement should be designed to be more difficult to use than the original. I have a couple of questions: how big is the water balloon and Beth, did your original tube have a bumper or a bar on the outside?

[joelc]

No other operation is required. They push it in from the outside. Yes, it is a bit more uncomfortable than the balloon type but it only takes seconds to do.

If you look at the picture on the previous page it will give you an idea how big the balloon is.

[GlenBrittle]

No other operation is required. They push it in from the outside. Yes, it is a bit more uncomfortable than the balloon type but it only takes seconds to do.

If you look at the picture on the previous page it will give you an idea how big the balloon is.

OK then .. I think a good shot of scotch would be in order , just to stave of infection of course.

Glen

[BethU]

Barry ... no, my original did not have anything on the outside, which is why it was so easy to keep dry and clean, I think. But perhaps this tube is slightly smaller than the original (?), so that a little supplement oozes out, or perhaps pulling the original out widened the opening.

The air balloon feels about the size of a golf ball, (or a little smaller) and it pushes the top part of the outer disk out, which in turn pushes the lower part of the disk into my skin, which rubs and gets quite sore without the gauze. Actually, my new PEG looks a lot like the illustration Joel posted, except for the curly-cue thing, and also mine has a third little extension, with which to deflate the balloon.

I think doctors and nurses don't realize how these things feel, or work in daily life. Also, my doctor assumed that someone else was helping me with feedings. The nurse was talking about how superior this model is, because it's made of thicker plastic. (which is why it continues to stick straight out.)

They wouldn't have to use any anesthesia to replace it ... just a quick tug out and a quick push in. Takes about 10 seconds.

This is not that bad. A pain to use and annoying to have so visible, but a small price to pay for keeping me alive and comfy! I'll maybe contact the doctor in a while if the oozing continues, but for now just letting it all heal. A nutritionist at the clinic told me you can get extensions for these short ones, and also clamps to hold everything together while you pour the supplement in. I'm shopping for those now.

[GlenBrittle]

Hey Beth,

Yes , they come in various widths. I found a chart previously , and the bigger the number in front of the "fr" the larger the diameter of the tube.

Let us know what you find.

Glen

[GlenBrittle]

I found the chart ...

[BethU]

Great chart, Glen. Thanks! I didn't know that.

Here's a link for the AMT clamp, which is what the nutritionist recommended. It looks like something to launch a moon rocket. I don't know if a BA in journalism qualifies me to operate such a device.

AMT - Clamp (http://www.appliedmedical.net/amtclamp.htm)

Apparently it is designed for continuous drip feeding situations, and talks about eliminating "messy disconnects." (So that is an issue with drip feedings as well as bolus.)

My biggest problem is holding the syringe together with the feeding tube while pouring. (My second problem is double vision, so I sometimes miss the real tube and pour all over my tummy!) There is usually some pushback from air in the stomach, so it takes a good grip with my left hand to hold the syringe and tube together while maneuvering water and food with my right, while lying on my back. With the long tube, you can "eat" sitting up. I'm also getting reflux from feeding lying down. My hands are getting weaker by the week, so my days of self feeding are numbered I'm sure.

I'll have to think about this clamp thing. It looks too complicated for me. (My niece had the perfect solution when she was helping me, once ... she said, "Why don't they make these things like screw-on caps, so you could give it a twist and the tube and syringe would lock together?" Too simple for medical science, I'm sure.)

I've thought of sanding the end of the syringe to give it a little grip inside the tube. Maybe I'll try that. Or maybe it's me that needs to get a grip. :lol:

[GlenBrittle]

hmmm ... has anyone found something larger than a syringe for a gravity feed ? The best I can find is a 60ml syringe.

Beth , that looks to be handy.

Glen

[BarryG]

So that clamp is for the gravity bag or the pump system, and wouldn't work with the syringe (unless it was a syringe with a screw on end?) and it does look more complicated than just using some tape. I agree that there should be a better attachment system to keep the syringe and the tube end together than just friction. I have only had a problem a couple of times with the syringe coming out and making a mess and I put a new Y end on the tube and that fixed it.

Glen, 60ml is the biggest I have seen.

[BethU]

I think you're right again, Barry. The bottom grip isn't big enough to wrap around a 1" syringe, and I can't tie a twist-tie any more so would have a lot of trouble with threading attachments through slots.

But I suppose I could go to a drip system when my left hand gives up the ghost, and postpone a nursing home for a while that way. And my husband is good at helping pour stuff, although he doesn't remember from one day to the next what to do, or understand quite what I'm up to. He thinks it's some kind of girl thing, and doesn't want to know the details.

He kept trying to get me to chow down at Thanksgiving dinner, offering me various dishes and looking wounded that I wasn't eating, and I had to remind him I can't eat, and he was surprised and asked why, and everybody at the table looked uncomfortable while explaining to him again that I'm sick. :roll:

[indigosd]

Oh, so much new information. Joel, glad to hear that you have not had any issues with your PEG. Glen, the chart is incredible and I thank you so very much. Barry, 60cc is the largest syringe available. Beth, that clamp is only to keep them connected and looks like it would be very difficult for someone with limited mobility or strength. DO NOT SAND the TIP OF THE SYRINGE!! You would then interrupt the integrity of the the surface of the PEG and that would not be good! So let me make certain that I am understanding what the problem is correctly-is it that it disconnects from the bolus syringe? Why not just use the bag for a continuous feed and hang it from a IV stand? The bag has a large opening to put in the feeding so that would eliminate trying to have the vision and the dexterity to pour it in the little syringe opening. The bag has a connector that is designed to fit the PEG, it has graduated little ridges so you have a built in gripper system. If you use it without a pump it becomes a gravity feed. Right?

BETH, I remember that you had mentioned that your Husband is a Veteran. Did you ever apply for assistance from the VA? I am certain that he would qualify and that would be such help for both of you! How can I help you apply??? Give me the word and the Monkeys and I will get right on it!! hugs, Kay Marie

[stephie]

My husband had his first one replaced with a button about a month after the feeding tube was put in. It sits almost flat against his stomach like a little air mattress button. For feedings we snap on an extension tube. There is no tube coming out of his stomach so there is nothing to tape. It only takes a second to snap on and off the extension tube and you can barely tell that he has a feeding tube button. He would highly recommend it!

[indigosd]

stephie, can you post more specific information such as a link to a site that show it or the name? I would love to know more about it! Thanks, Kay Marie

[stephie]

I believe this is the button my husband has. Mic-Key.com (http://www.mic-key.com/index.asp?page=product) He has the one on the website home page that has a little plug attached to it. Just like a blow-up toy or air mattress, you unplug the button to connect the extension tube and put the plug back in when you are done. Food does not come back out of it, so you don't have be really quick about the plug. The only part of the feeding tube that is outside his body is about an inch in diameter. It sticks up maybe a half-inch from his belly. I think it is easier to use than a regular tube, because the extension tube has a built-in clip for a clamp. You just push the clip in when you put the extension on and unclip it to start the food. Once the extension is attached it works the same way as any feeding tube. I hope I am explaining it well enough! Please ask if you have any more questions.

[BethU]

The extension actually snaps on and off ... you don't have to hold it together by force? That would be a godsend!

Kay Marie ... what an angel you are! My niece is trying to get vet information now. Paul was very organized after WW II, and kept all his papers, sargeant's stripes, etc. Not so much documentation after Korea (I think he was so glad to get out of there, he didn't want any momentos!), and our niece has taken all our info from WWII to see what's available. If she comes up empty, I'll get it all back and see what our great minds can do together! Merci buckets!

[sadiemae]

beth all you need to do is google dd214 and a site will pop up where you can order his discharge papers(dd214) for free. It takes about 10 days to recieve it. You do need to fax them a signature, other than that, it is free. If you cant find the site, PM me and I will get it to you. Lori

[joelc]

Beth, if you are having trouble with your present tube you will likely have more trouble with a Mic-Key. And if you twist the tube even slightly it will come off. We had nothing but problems when I tried one, my wife could not get the hang of inserting the tube and having it stay in and it was always clogging because the connection between the button and tube is very small.

[BethU]

Lori, thanks for that information. I'll do it tomorrow.

Joel ... thanks for the warning. If your wife had problems with it, I'm sure I would, too. My problem now is really not the tube itself as much as my weak hands and bad eyesight. Going back to the long tube, or a drip system, will probably handle it.

[indigosd]

Only 11 more days! He goes in Monday for PFT's as part of his pre-op. I know that we are soon looking at BiPAP...

[BethU]

He will find the BiPap as helpful as the PEG. These are both positive steps toward a better quality of life!

[indigosd]

TOMORROW IS THE BIG DAY! Web will be a member of the long tube club!

[thelma313]

I am sure Web will do great! Tell him he's got a battalion of supporters here rooting for him! :)

[BarryG]

Best wishes to Web, I know he will be fine and using his long tube before you know it. Please let us know how it goes.

[tdamess]

best of luck tomorrow,

[KeeKer]

Good luck! We'll be waiting to here how it went.

[thelma313]

How did it go? I hope all went well... we are waiting to hear. My thoughts were with you both.
Big hugs...

[indigosd]

It is DONE! Web is now an Official member of the long tube club! It was a negative 18 when we left the house but no snow, NO WIND and the roads were dry. :)
We did give him his Paxil at 0700 with just enough water to get it down. We met with the Dietician, Social Worker and the RN from their Home Health. The dietician did not understand that we were doing this proactively so that was a little confusing -she thought we would be doing continuous feeding immediately :confused: The Social Worker was somewhat helpful-told me of 2 State programs that we may qualify to get medical care for Matthew. I have no idea why the RN was there-she didn't teach us anything nor will they be able to come and help at the house because we are in another County. :twisted: Oh well.. The Social Worker did tell me of a GREAT program for the people that live in their County [doesn't help me] but thought that I would pass it on to the rest of you in case your County has something similar. SOME COUNTIES WILL PAY FOR YOUR COBRA!! It is cheaper for them to do that than for uninsured people to use the ER for their Dr. office. Check with your County if you can get Cobra through your job and see if that is available!!
The procedure took less than 10 minutes. All he had to remove was his shirt. He was given Demerol and Versed IV and also given a IV Antibiotic prior to the procedure as a precaution. He was scoped through his mouth. He spent about 2 1/2 hours in Recovery. I got a rx for Tylenol with Codiene elixir. He is attached to a Foley Cath drainage bag for the first 24 hours. Did anyone else have this done? No one said anything about that! I left the Hospital to go and pick up the pain medicine. I was gone about 45 minutes. I came back and his connection to the foley bag had come undone and his jeans were SATURATED with stomach contents-his entire front and all the way around the back!! hmmmm...no change of clothing and does that mean that no one had checked him while I was gone..? And we have an hour drive to get home. I cleaned him up as best as I could and put dry hospital towels between his skin and the soaked underwear and jeans. Bigger issue is that the connection between the cath bag and the Peg doesn't work!! They had just jammed the end of the foley bag into the little Peg opening and then tried to secure it with tape. :shock: So I ask for a connection adaptor and they have no clue what I mean!! Their suggestion was that I see if there is such a creature at my local hospital. Web is soo ready to go home and we need to get back to get Matthew from school so I just plug his Peg and off we go. When we get home I get all of his soaked clothing off, quick bed bath to remove the goo, give him pain med and try to attach the cath bag and it just is NOT going to work! [I can now so appreciate all the comments about the PEG leaking! lol] hmmm...sure seems like that is blood that I see under the compression dressing that they said may have a "little" drainage and that i would not need to remove for 24 hours...I peel off the edges to peek and :shock: all four 4x4's are saturated with BRIGHT RED BLOOD. WTH! No one said anything about BLOOD! I removed the dressing-cleaned it, reapplied a new pressure dressing. Called my local hospital and spoke with my nurse friend to see if they had the adaptor that I needed. She didn't know but I could come and look! Kiss the guys goodbye, load up the fur friend Chip the dog and off we go. YEAH! I found the connector and also got some nice abd pads. :) Got home and it worked!! Pushed 5 cc h20 through the Peg and listened with my Stethascope to make sure it was where it was suppose to be-all good to go so I connected him. Checked him before we went to bed-just a small amount of bleeding and no drainage in the foley bag?! Have no clue what that means so will check with the surgeon in the am. He is uncomfortable but not unbearable with the pain med. Walks hunched over because it hurts-anyone else do this? Surgeon said that he will replace this with a Mic-Key in 6 weeks if that is what we want to do. Love, Kay Marie

[paleshia]

praying for quick healing and no more snags in the process.....hopefully he will stay comfortable and dry. give him our best wishes.

[indigosd]

Tussen TAKK Jen! He was totally disgusted with the tummy juice bath!!

[thelma313]

Whoa! I am giving you a standing ovation. Well done, Kay Marie. I got totally weak in the knees when my dad got his PEG and there was no leaking. Just reading about the bl**d (I can't even say it) gives me the willies. You are a superstar!

And I am so happy that the worst is over and Web has his PEG. Please give him my best and wish him a super speedy recovery.

[SavoringLife]

Kay -- you are amazing! I feel silly even complaining about Jim's recovery issues after reading what you & Web went through! Hope he is continuing to recover well, and yes, Jim walked hunched over for 4 days. Just now able to walk more upright and it's been almost 1 week since surgery. When are you starting your first Peg feeding? What is the recommended treatment plan? Since Jim is using the PEG for 100% of his nutrition, our treatment plan is 6 cans/day of Isosource 1.5. Right now, though, he can only manage 3 cans + 3 cups of water. Otherwise, he gets that overly-full feeling that we are supposed to avoid.

Keep us posted on Web's progress -- he is lucky to have such a capable caregiver!

[indigosd]

:oops::oops: aww, you girls-it was nothing. Bl**d doesn't bother me one bit but :shock:
MUCOUS will make me retch and gag something awful!! Please never ever show me slimey [gagging] snot!! lolol I am HAPPY to report that he is up, the PEG is draining well and no more b#*%d on his dressing! We got a good laugh watching his Irish Cream coffee go down one tube just to come out the other! In an hour I will disconnect him from the bag and stick him in the shower and then feed him. Life is looking up!

[joelc]

WOW, not sure what advice I can give. I am amazed that you were not provided with better information and supplies before going home. I have never heard of a Foley bag being needed. I almost feel guilty with how easy mine was.

I hope you can put this experience behind you very quickly.

[KeeKer]

glad that Web is home and everything is fine(?) Would of found me on the floor with the first needle never mind the blood. you are a brave and resourceful woman.

[indigosd]

nahhhh Just an old Nurse with decades of experience. :] I have him in the shower right now and no more bag! YIPPEE!!

[DgtofTNfan]

What an ordeal. Who would send someone home with a brand new PEG and no adaptor and then recommend you to swing by somewhere else to see it they have it. Odd. LOL at your reference to "such a creature." Great thing you are a problem solver and have good connections (pun intended). Sheesh.

Hope Web heals quickly.
Dana

[indigosd]

Dana, it is good to "have connections" and to be "ADAPTable"! lmao He is having some discomfort but nothing too horrible. Slight oozing. Off to do wound care and the evening flush of the long tube!

[BarryG]

Kay, I am glad that you're on the job and that Web is doing ok. The peg tube is very easy once you get used to it. You mean that they gave you a peg tube without a Y adapter end? That is like selling you a car without any wheels, useless at least.

I had some bleeding for a few days but it quit so I'm sure it will for him too and after a couple of weeks he will almost forget that it is there.

[Melodyparrish]

You are such a ROCK STAR :cool::-D

I had no idea that place pegs no as an outpatient procedure:shock:!! AND, it sounds like the center was staffed with an entire squad of big fat goofballs :shock::eek:!! Thank God you are a "trained professional". All I would have been able to do was kick up a fuss and demand someone HELP!!! I'm there with you about the grossed out by slimy stuff!:mad::-x

I am glad that Web is up and about today...stupid, non-clinical question...did you actually pour the irish cream coffee INTO his tube??! :confused:

Love,
Melody

[indigosd]

Mel, your the best! No, he drank his brewed Irish Cream coffee that was 1/2 heavy cream and fortified with REAL SUGAR [love those fat calories!] Sooo...while he was slurping it down his mouth it was COMING OUT the peg and draining into the collection bag! I suggested that we just connect the drainage back up to his mouth and have a continuous loop of recycled Irish Cream. :] I have a twisted and sick sense of humor. I think that all PEG's are done as Out Patient procedures for everyone-anyone else? It is just one more way for the Insurance Companies and Health[I don't]Care to maximize on their MONEY!! Trust me, I spoke with the Head of the Department and the Hospital Administrator the next day with a detailed Constructive Critique. Honestly, I don't know if this is what normally happens or if it was just our special experience! IF it always is like this, they need to change asap and I gave them many suggestions from the viewpoint of the PALS, the CALS and from a Nursing observation. We do not want this to be the reality for one more person! Apparently they did not give him a very big dose of the Versed & Demerol-he was AWAKE and definately felt the procedure as uncomfortable. He is also VERY CLAUSTROPHOBIC and they strapped down his arms and legs. I told them that he could not be FLAT as he can not handle his secretions and will choke and they put him flat. The Nursing staff did not check his PEG or the connection to the drainage bag for the 45 min that I was gone. The Nursing staff did not offer any alternative to assisting me with finding him clean and dry clothing for the 1 hour ride home when it was 18 below zero. Maybe they could have gotten him some scrub pants? The Nursing staff did not do any return demonstration of wound care, how to manage the peg with flushing, checking for patency, s/s of problems and how to address potential problems at home, no one said anything about bleeding, they did not give me ANY supplies [I had to ask for a 60 ccc syringe so I could flush him at home] the post op discharge instructions were generic and not specific to a PEG. No tape, no sterile 4x4's, no connector that worked and I had to request pain medication on top of all of that. If I do not hear from them by next week with how they are fixing their flawed program, I will call again and not be so nice. :] The good news is that Web is walking a little straighter, the wound looks good, PEG works and I taught Web how to do wound care and how to flush and he did it on his own last night for the first time. :] I asked Matthew if he was ready to learn and I got a adament NO! I had to lol. This is the child that has always said that he is going to be a Neuro Surgeon and wants to go to Duke. I said, "Matthew, it is no biggy. If you can not do this-how are you going to be a Dr?" His pithy reply, "Momma, that is what Nurses are for!" ROTFLMAO He will learn to do it eventually-just not today. :]
Barry, it is a real Peg and has one part for the fluids and one little port for the balloon. I think that the confusing issue was the 24 hours of straight drainage to the foley bag. They didn't have an adaptor to connect the PEG to the drainage collection bag that fit and just tried to tape it together and it didn't work. SOOO did anyone else have 24 hours of being connected to a drainage bag? Was anyone else awake, aware and uncomfortable during the procedure? my inquiring mind wants to know :]

[SavoringLife]

Hi Kay Marie, To answer your question, no, Jim was definitely not awake and uncomfortable during the procedure! And, he did not have a drainage bag either. I have never heard of that. Glad to hear Web is doing well. It has been a week since Jim's procedure and he is now up to 6 cans/day (plan goal) and the muscle trauma is getting better every day.

[indigosd]

Was it outpatient, did he have IV antibiotic pre-op, were you given real care instructions and supplies for home care? Thanks for answering and I sent you a friend request :] Happy to hear that your Jim is improving! I am certain that it is due to all of your TLC!

[BarryG]

Kay, when I had my peg put in last February i was in the hospital for four days so it was most definitely not an outpatient thing for me. I went in on a Wednesday night for a Thursday operation, when they did the operation apparently I had some breathing problems with the sedative (I dont remember anything after they strapped me down) so I was rescheduled for the next day. The Friday operation was with a full anesthesiology team and it went well (again I was completely out and don't remember a thing about it) and then they wanted to keep me overnight to make sure that there were no complications. As it was now the weekend there were no dietitians around to show us how to use the tube so the nurses were our teachers. We started out the feedings using a gravity bag and then very quickly went to using the syringe alone.

I was given a bag when we left the hospital which had a couple of syringes, gravity feeding bags, gauze, tape, Q-tips and a case of formula.

There was no drainage bag for me, maybe they just wanted to make sure that the tube was working? Or maybe it is something to do with him getting a tube with the water balloon right away? That is unusual from what I've heard on here.

Glad that he is doing well after all that, it does sound like a bit of a screw up.

Barry

[indigosd]

hmmm...another question, this is day number 3 postop. Last night I saw just a little bit [about 1/2"] of fading bruising around the PEG site. This morning he has an area of greenish yellow bruising that extends about 4 inches in diameter. Anyone else have that??

[joelc]

Sounds like the doctor was overly rough. I did not have any of those problems at all. It was very easy for me and there was zero recovery needed. I was awake for most of the procedure and it only took 5 minutes, I got up and went home. No pain and simple.

Sorry for what you have been through! It does not seem right.

[BethU]

Wow, Kay Marie ... just catching up to this thread. I'm so sorry Web had such a horrendous experience!!!! One of our forum members (Sharonca) was awake during her procedure, too ... a horrible experience.

Haven't heard of a drainage bag before. I didn't have the bruising, and haven't heard others mention it, but it sounds, as Joel says, as if they were pretty rough.

About the nurses: Those are about like the one I had after the PEG. She asked "Who'll be doing the caregiving," and when I pointed to myself, she said, "Well, then, if you don't have a caregiver, I guess there's no one to train!" and walked off. Fortunately, another nurse showed me a few basics before I left, and I figured the rest out by trial and error.

Thoughts and prayers for speedy recovery to Web and Jim and all others having the procedure done. It can go easy, but sometimes it doesn't, so we need to remember not to "over sell" the procedure as a snap for everyone. With every invasive surgery, there are risks.

Hang in there ... and Merry Christmas!

[indigosd]

wahhhhh I am going to see if he will allow me to photograph it so you cansee the bruising...

[t34gib]

First of all, how do I start a new thread. I don't have the button. Next. I had a peg put in on Thursday at Mayo in Jacksonville. I did not want to do it locally as I am not sure they deal with ALS patients here in Ft. Pierce very often and I was leery of the breathing problems I could have. They told me they would not put me out because of the breathing problems and that a respiratory specialist would be in the room with me. We in fact had to wait quite awhile while he was finishing up in the next room. Everyone was very supportive and helpful. Had an appointment first on how to take care of it and how to do the feeding then saw my Dr. who made sure everything else was ok. I was afraid of them not putting me out as I did not want to be awake, but i am brave and went ahead with it anyway. When I was in the operating room they gave me something that made me a bit woozy and when everyone got into the room the Dr. put the nasal tube in. I was really worried about this as I gag real easy and didn't want to bring on a laryngospasm, but it was not bad. i remember feeling it in my throat and the Dr. giving me a shot in the stomach, not too bad. Then I heard someone say, i think we can give her something I don't remember what because she is tolerating something very well. Next thing I new they were wheeling me back to recovery. I stayed there for an hour or so and they let me go home. I had a three hour drive home but the anesthetic was still in affect so it wasn't too bad. Had a bad night and today was real sore. I thought I would be going back to work today but that was not to happen. Now it is not too bad. Some soreness as expected but I hope to be back on the golf course by my birhtday, Jan 1.
It is weird having a tube coming out of my stomach and I am hoping I will be able to hide it under my clothing. I have it taped down right now, but everything else seems to be ok. I have given myself water a couple times today for hydration and I guess i will learn to live with it. So all in all, it has not been bad. They want me to try and maintain the weight I am now and will adjust feeding schedule if I start to lose weight. i will only be using it once a day for feeding with my dinner for now.
Anyway, just wanted to share my experience.
I am so sorry that others have had a bad time with it. I am hoping to recover rather quickly.
NancyS

[indigosd]

Nancy, you are one tough cookie and I am soooo impressed! How are you doing now? I have taught Web how to flush and do wound care and he is doing fabulous with it all. The bruising ended up being about a 3 1/2 inch diameter but is almost gone now. He rotates it twice a day and the wound is healing nicely. He refuses to use it for anything but the flushes for now which is ok with me. He says when he gets tired of choking he will let me know! Ok FINE. He gets to call the shots. :] I must say that it was more difficult for him than I had anticipated and I am really glad that we had it done sooner rather than later.

[stephie]

Good heavens! I can't believe your husband's peg tube was an outpatient procedure! My husband was in the hospital for 4 days. He did have a drainage bag for a couple of hours. The nurse told us that the purpose was to drain the blood from the stomach after the procedure. My husband was also awake for the procedure because his breathing was a concern. They were afraid that he would stop breathing under anesthesia. We left the hospital with about 2 weeks worth of supplies and had 3 follow-up visits from a nurse once we were home. I am so glad that your husband is recovering nicely despite his limited hospital care!

[indigosd]

Stephie, wish I could move to Minnesota! South Dakota...don't even get me started! How are you and your husband doing and welcome to the forum!