I've been re-PEGged

BethU · 10-13-2009, 09:39 PM

Well, the feeding tube brush was a good idea, and so was a baking soda solution, but my supplements were caking up on the inside of my tube faster than I could clean them out. I was reduced to filling the sink with hot water and leaning over and soaking portions of the tube to soften the caking, then squeezing it out like toothpaste. No matter how much I flushed it, the stuff built up around the nozzle and clamp.

I could get the stuff in using a plunger, but I'm not strong enough to use it alone. I have to put the funnel in the tube, the plunger in the funnel, then lean my weight against the wall to push it in. And I can't pull it out again.

So I Dynavoxed the gastro guy and he said to meet him at the hospital's GI section this morning at 8:30 and he'd check it out.

So I did, and he did, and he replaced it on the spot. I was lying on the gurney in the room where they give you the hospital gowns and he said, "Don't take your coat off. At the count of 5 I'll pull it out. It will sting for a moment or two."

Well, it wasn't bad. Mine was not an air or water balloon inside, but like a molly bolt, or a little umbrella. He had opened it up after placing the original one. Actually, the plug looked like a little mushroom cap. This new one has the balloon, so there won't be any "sting" at all when its replaced.

The problem is this one is much shorter (about six inches) and has no clamp. So when you open it, stomach contents run all over until you can get the funnel in. Big mess.

The bigger problem, however, is that it is much thicker plastic and it sticks straight out. It looks like I'm walking around with a hard-on, but in a most peculiar place.

I thought I could cut my hair and pretend to be a 14-year-old boy, but I'm afraid I wouldn't pass.

This will really mess up the silhouette on all my Dior gowns. I don't know what happens next. The nozzle and tube are all one piece (after I just bought 2 replacement nozzles at $15 each), so I'll have to find some sort of separate clamp.

There is a little aching, but if I had the energy to take a Tylenol, it would knock it down. Some bleeding. He said I could use it right away, and I've had two meals with it. We'll see how it goes.

Jeannie · 10-13-2009, 09:53 PM

Dear Beth
I am sorry to hear about the lack of clamp, there has to be something out there.... your sense of humor though is amazing, you are an inspiration to me.
In friendship
Jeannie

joelc · 10-13-2009, 10:06 PM

We just pinch the tube and put the syringe in, you get the picture. Is pinching out of the question? I have never used a clamp, but would think it would not be any easier than pinching. I am taking out of ignorance here. LOL.

I am glad you are past the experience of getting the first tube out, now replacing is very easy.

serenade · 10-13-2009, 10:25 PM

Awww Beth that sounds terrible! You might want to try using a clothes pin for a clamp till you get a new one. I tried it and it worked. I just got a peg tube last week and it has a big clamp on it, I find it to annoying and may opt for no clamp and stick to the clothes pin.

GlenBrittle · 10-13-2009, 10:29 PM

Beth,
That doesn't sound too bad for a change out.

I have been thinking of different types of clamps.
already mentioned clothes peg

how about a bobber used in fishing with the push out clip ?
roach clip with the purple feather attached ?
vise-grips ?

Mine also has the big plastic clamp on it. It was irritating me with the sharp corners so I took an emery board to it and rounded off all of the edges. It doesn't bother me much anymore.

Joel , did you go to the mickey ? Pro's , con's ?

Glen

joelc · 10-13-2009, 10:43 PM

I did try a Mic-Key but did not like it. My wife always struggled to connect the tube and it clogged every other day. She got really frustrated with it. The advantage is there is no tube to contend with.
We replaced it with one that has a short tube attached and have not had any problems.

If you guys can handle pliers and clothes pins, why not just fold the tube over to pinch it off?

BarryG · 10-13-2009, 11:17 PM

My tube never had a clamp and I have always just folded it over like putting a kink in a garden hose. In fact I don't even have to kink the tube with my fingers, I just push the tube down against my shirt and it kinks itself.

Beth, I am glad that that is over for you but I have a couple of questions. First, did your doctor say if he has seen the build up before? Mine has a build up where I kink it which sounds like the same as you having a build up at the clamp location. The formula build up hasn't caused any restriction in my case and my brush arrived today so I will try your baking soda solution to see how that works for me. My second question is, if the ones that they use to replace the first tubes are so much easier to replace why don't they put them in in the first place?

The thicker, shorter hose does worry me though, one of the selling points of the peg has always been that it is unobtrusive and easily hidden. And if the replacement hose sticks straight out wouldn't it also be uncomfortable under your clothes? I mean it's not like any of our clothes are made to accomodate a hose that sticks straight out of your abdomen.

Anyway, like I said I am glad that the tube replacement is over for you, I think that I am not far behind.

Barry

holdingouthope · 10-13-2009, 11:38 PM

we use these in the hospital and they work great!

BethU · 10-14-2009, 12:13 AM

Barry ... it would make sense to use an easier-to-remove device to begin with, but I'm sure $$ was involved somehow. He did say the opening was as good as any he'd ever seen, and congratulated my caregiver, although it is me who does the maintenance. I hope they can work that into my obit: "Her artificial orifices were much admired in the medical community."

The shorter hose is a problem, though. When you depend on gravity, it helps to hold the funnel up high, and the longer one is easier to maneuver. As far as the sticking out part, I think it will tape down pretty well, although I don't like messing with tape again.

At least it was quick ... agout 5 minutes. And no needles or anesthesia to bother with.

KeeKer · 10-14-2009, 12:25 AM

Beth, so sorry to hear of your difficuties!Hope that the new one gets broken in quickly and you work out all the kinks!

The picture you have put in my head is hilarious! take care of yourself.
Colleen

tdamess · 10-14-2009, 03:00 AM

i am so sorry you had this problem , glad it is better now

tdamess · 10-14-2009, 03:05 AM

lol glen i have not heard -roch clip - in year's actually forgotten all about it

indigosd · 10-14-2009, 08:49 AM

ROTFSMAO I am in desparate need of Zaphoon's anti-snorting medication after reading your post! "14 year old boy" and this one "He did say the opening was as good as any he'd ever seen, and congratulated my caregiver, although it is me who does the maintenance. I hope they can work that into my obit: "Her artificial orifices were much admired in the medical community." Beth, you are such an inspiration to me and to the forum! Again, I am so sorry that you have to endure all of this and I wished that I lived closer so that I could be your CALS!!! OMG Glen-the ROACH CLIP!!! with feathers no less!! I am sooo grieved that my sweet Husband has this ghastly ALS but I am soul grateful for all of you, your support, your laughter and your wisdom!

GlenBrittle · 10-14-2009, 02:59 PM

Hey Beth,

I was speaking to my Homecare nurse (weekly visit) and the mick-key and she says there is an extension that you can put in before you hookup to your food & drink.

She said its a bit more to keep clean , but if you are out n about , it doesnt show up under the shirt.

Glen

BethU · 10-14-2009, 03:14 PM

Thanks, Glen ... that's good to know! I'll check into it.

I appreciate the illustration of the hospital sissors, Holdingouthope, but I can't use sissors any more, or anything that requires a "grip" position in my hand. I am thinking of vicegrips, but the one I have is so heavy, I'm afraid it will damage the tube. Everything I take in runs out all over my lap by the time I can get the plug back in. What concerns me most are meds ... I don't want to miss a molecule of my lability meds.

I've lost two more pounds this week, but can't blame it on the tube. Only got that yesterday.

My caregiver today used a small chip 'n' clip thing, which slowed down the spurting when she took the funnel out, but we still lost about a quarter cup of supplement. I can't open the clip with my fingers, but can with the palms of both hands. But then I need a third hand to hold the tube.

The upshot is I can no longer feed myself.

I will have to enlist my husband for now, and he's not too good with anything medical. But he's become a believer that I'm really, really sick since my ER visit last week, and is really motivated now to help me keep going.

The extension sounds like a plan, and I'll look into it. Thanks all! I knew the day was coming when I couldn't handle this myself, but thought I had a few more months of semi-independence.