A PEG Experience

[AnnMarie]

Thought I would share a recent event with my PEG.

I had it placed 6 months ago. Received all the information of what to do if something happened. Thinking of course, that won't happen to me. Guess you know where I am heading now with this.

My husband and I were you on a 7 day cruise and the morning of day 5 my whole tube was resting in my hand post shower. After an expletive of Oh $&*# I called my husband to see and after his expletive of Oh $@*# I very calmly put it back in and taped it down. Called the ALS clinic and I they said that's right, don't use it and get to the hospital as soon as possible for a new one. Explained I am in the middle of the ocean. Got thru the next 2 days with ice cream and whatever else I could get down. Arrived home and had a new one placed today. It was an experience, and I will never say "that won't happen to me "again. Thankfully my husband and I have a sense of humor and did not get all crazy about it coming out. Always learning.

I have read online about emergency kits with foley caths and saline for the balloon. I have another cruise in 6 months and want to be prepared. I could put the foley in and have the cruise medical center do an X-ray to confirm placement.
Does anyone know of these kits?

Thanks
Annmarie

 

[4tloml]

Wow, AnnMarie, you are cool as a cucumber! I might have panicked in that situation. Thank you for sharing it, though--feel like we can be better prepared. I'm looking forward to hearing what others may say about the kits. My husband gets his tube placed tomorrow.

 

[affected]

Well done indeed!

It never happened to us, but we had a bard button. It does not have a balloon and so they don't come up. They are not as common, but pretty much the same as the Mic Key otherwise.

I like the idea of a repair kit on hand. Maybe Diane who has had a peg a long time can give hints if she ever had one pop out?

It's probably a good idea to also have thickening agents on hand. Did you try having them make you a smoothie based on your peg formula?

 

[Ells]

What about bringing a spare balloon retained PEG tube with you, rather than the Foley catheter?

It's straightforward to put in and obviously it can be used for feeding etc.
I'm not saying to switch permanently to balloon tubes, unless you want to, but if you're thinking of a Foley, a balloon tube would make more sense.

Just FWIW, saline should not be used in balloons, only sterile or distilled water.

 

[Green Queen]

AnnMarie I really hope you get the answers you need to make the next cruise slightly more relaxing!

 

[AnnMarie]

Thanks 4tloml, wishing your husband well with the procedure today.

Affected, I carried my thickener with me and was able to have smoothies as well as ice cream and yogurt. One of the restaurants blended up a piece of prime rib for me. It looked disgusting but tasted good.

Ells, do you mean like a Mic Key button? That needs an extension tubing right?

I go to clinic early April so will find out their suggestions. Will pass along any information.

One other quick question, when traveling what does everyone do with their formula? Ship it, pack it in luggage and check it, or carry it on the plane

Thanks All
Annmarie

 

[Ells]

Hi AnnMarie,

It could be the MicKey button or the standard Mic G tube, both have balloons. An extension tube and bolus tube come with every button, so you'd just need to bring a lubricant.

Ells.

 

[Diane H]

You can buy feeding tubes on line. Do a google search for your brand. Choose your size. Be sure you get a gastrostomy tube, not a nasogastric tube. Should be $20 to $40. Kits aren't available for replacing tubes but all you need is a packet or tube of KY to lubricate the tube. If you have a balloon tube you will need a 5 or 10 cc leur lock syringe. These are syringes with a screw on tip and no needle. They will fit the balloon port. Because they are needleless, you can buy them online, probably the same place as you buy the feeding tube, but you will probably get them in a multipack. Otherwise just stop in at your doctor's office and ask for one. You can fill the balloon with air so no bottle of sterile water is needed.

Many people with well established feeding tubes replace them themselves at home without an Xray but if you have access to an Xray, I would do that. There are several checks for placement you can do before using the tube if no Xray is available. Click on my name and then click to see my website. The placement checks are under Feeding Tubes/Tubing Care.

 

[AnnMarie]

Thanks Diane. Great information.

I want to be prepared for the next trip.��