Getting a PEG next week - looking for tips

[JimInVA]

Robin - I wanted to comment on the process of getting the tube installed. When my PALS had hers inserted, she wasn't using her BiPAP on a full-time basis... BUT, she did need it to be comfortable when laying down. Aware of this, I brought her BiPAP with us (her Trilogy was able to operate on battery). The hospital nurses said, "Oh she can't use that during surgery... but we'll give her oxygen." I'd already played that game with hospital staff a year earlier while attempting to get Darcey's MRI done with oxygen while laying prone. She couldn't breath... and ultimately we had to cancel that visit and find an MRI that allowed her to sit upright during the process (this was before she'd been diagnosed with ALS and had been prescribed a BiPAP).

With the "she can't use that" proclamation, a look of fear and a silent plea of "help me, please" screamed from Darcey's face and eyes. I tried to explain what the BiPAP did and why it was important for her to use it. But they were adamant that it would not go into surgery with her. I was surprised (even shocked) at how contentious the back and forth was becoming. So I ended the stalemate with "then you'll need to get the anesthesiologist in here to talk to me. if I don't hear directly from the doctor's mouth that he'll allow her BiPAP during the procedure, she's not leaving this room... except for us to go home."

Ultimately, the doctor did come in to talk with me because I wouldn't let them take Darcey out of the room. I explained to him the need for the BiPAP and he agreed that he'd allow its use during the PEG's insertion. It was the first time (of many times) that I had to stand up to medical staff for their insistence on doing something I knew wasn't right and proper.

They wheeled Darcey back in after surgery. She wasn't using the BiPAP, but it was hanging from the back of the bed. And because she was sitting at about a 45 degree angle, she really didn't need it. By this point, the nurses were not particularly pleased with me and quickly left the room, closing the door behind them. Darcey was awake and was talking to me when she began to have problems breathing. Of course the nurses were gone and I didn't dare leave Darcey to track them down. So I moved behind the bed, turned on the Trilogy and quickly put her full face mask on... which immediately helped her to begin to breath a bit easier.

I'm sure that Laurie could explain what happened, better than I can. But it had something to do with her coming off the anesthesia while also having impaired lung function. Again, it was a situation that the hospital staff should have been aware of and monitored for... but they did not. Five minutes later, Darcey was feeling better and was okay to remove her mask. But for a bit there, it had been a bit scary for both of us!

So... I don't want to put you on edge... but I do want you to be aware. If your husband uses a BiPAP, I would absolutely encourage you to have it with you. And I want you to know that you are your PALS best advocate... and that sometimes, you may actually have a better grasp of a situation than the medical staff that "should" know better.

I'm excited for both of you. It is always good to have options... and the PEG gives you more options when they might be needed... whether immediately or months down the road.

My best...

Jim

 

[lgelb]

Glad Darcey had you there, Jim! Your story is one of several I've heard with the theme of "keep your BiPAP at hand, especially when in the hands of others."

Bottom line (not for you, Robin, but others): get the tube placed in Radiology absent GI history that prevents it. That way you will not have heavy-duty anesthesia like you would in a surgical suite. Bring your BiPAP. There is ample medical literature as to why it's a good thing for PALS. The procedure in radiology should be quick enough that you might not need it if you don't use it all the time, but to have it there is a safety measure.

As Jim points out, impaired lungs may not do well with 0-60 situations like surgery and/or lying on your back, even at an angle. Hospital staff are usually in a mode of, this person needs BiPAP 24/7, this person does not. If there's no order for 24/7 use (and sometimes even if there is, but we won't go there), it can be hit and miss. And it's always easier to presume when a caregiver's around that they're handling things like BiPAP.

Just for the record -- if you are going to a hospital for any reason, even an outpatient procedure, bring your BiPAP if you have one, and be prepared to use it. The difference in time between your having it at hand and getting an order for it or someone going back for it could be life and death, and oxygen of course is not the same.

 

[vltsra]

Robin, my PALS had his PEG placed in Interventional Radiology. He was on bipap for the entire procedure. The procedure was quick and he was fine. Little pain afterward. We used the PEG initially for hydration and supplements but now it is his main avenue for feedings.

We tried IsoSource first as that is what was provided. My PALS had diarrhea for days. At first, because it was supplemental feedings only, we were paying out of pocket, and I found Real Food Blends on line. Once I started him on that the diarrhea ceased. I like Real Food Blends because it is actually food. The packets smell good when I open them. Medicare covers the Real Food Blends. We also do blend things for him, and sometimes if he tires while eating by mouth I blend the rest of his portion and give it to him through the feeding tube.

Good luck, I'm sure it will be a good decision.

V

 

[rmt]

Jim, thank you so much for your input on BiPAP. My husband isn't on BiPAP at this point, but it is really good to know for the future. And the reminder that I am the best advocate for my husband is so helpful. I'll be ready to fight for whatever he needs.

V, I like hearing about a procedure that went smoothly! I'm worried about how he will tolerate the formula so it is nice to know that you have had success with Real Food Blends. And with blending "regular" food.

 

[PrimaVera]

My local VA now carries Kate Farms (only in patient). Medicare and other insurance cover full cost. I went to tube feedings full time immediately and had no issue with having to try crappy corn syrup based products first. Just say you will tube feed only before discharge…what you do at home is your business. Liquid Hope is another great organic formula.

If he has pain, ask to have tube loosened against belly skin…mine was pinching badly, and felt much better after loosened. Not sure how anyone does it as same day surgery!

Vitamix is a very strong blender.

Get a PEG tube pump (mine used Kangaroo Joey) before discharge. You can “eat” while sleeping, watching TV, etc. My VA has been great at keeping ahead of my equipment needs, but I do have to anticipate and ask for stuff.

 

[rmt]

PrimaVera, thanks for the tip about saying we will tube feed only. And good to know to look out for it pinching. I'll ask for a PEG tube pump! We are really looking forward to my husband being able to eat while we watch baseball! We used to watch all the games together, but now he is spending so much time trying to eat and drink enough that he's missing so much. We are so ready to get back to a more normal amount of time spent eating and drinking!

 

[Firefighter58]

Hi, I have had my peg for about 5 years now and I find it very good for taking my meds, I have had no pain at all and I still eat in a normal way. I sometimes wonder why I have a peg but I know it is a stand by in case things get worse, but thay haven't yet.

 

[nona]

I've also had my mic-key for five years and now use it 100% of the time for food, water and meds. I had the surgery in Interventional Radiology with a one night stay. My abdominal muscles hurt for about a week but Tylenol helped. I couldn't handle the Isosource and other corn syrup and GMO foods. I have had no trouble getting Kate Farms covered by insurance. Liquid Hope is also well tolerated and more fiber rich. Also if you get the mic-key, plan to have it changed every 6 months or so. Initially it was done by IR but now one of my nurses does it in my kitchen. Easy peasy.

 

[rmt]

Jessie, we definitely want to get the mic-key! Good to know it will need to be changed every 6 month-ish. And how great you can have it changed at home! I hope we get to that point too!

 

[lindyazmn]

I second the comments about pain. My husband was the dude who never took medication of any kind--high pain tolerance. But the surgery brought him to his knees. Definitely stay on top of the pain and take meds! Also, my husband ended up with a terrible infection that the doctors insisted was "just normal post-surgical drainage." After a week, I had finally made enough noise to be taken seriously, got it checked (the doctor looked sick after taking a tiny whiff), and antibiotics took care of it. Finally, my husband had some mild IBS issues, so we were prescribed the plant-based formula from Kate Farms. It took a couple weeks, but he ended up tolerating it really well.

 

[rmt]

lindyazmn, I'm worried about the pain for my husband. He doesn't like to take pain meds, but hopefully he will for this. We will keep an eye out for infection. Your experience sounds awful with the doctors not taking you seriously!

I've ordered some Kate Farms and some Real Food Blends to try. And we'll see how he'll tolerate whatever the VA sends us home with. He usually eats very healthy things, so I won't be surprised if he doesn't tolerate the ones with a lot of corn syrup, etc.

 

[JimInVA]

Robin,

I hope that what you take away from this thread is that every situation is unique to the person. Your husband (and subsequently, you...) will likely come through with flying colors and without difficulty. But, though he might not even be aware, he has you standing by... ready for most anything that can happen and certain to make his procedure the very best it could possibly be. YOU GO GIRL!

My best...

Jim

 

[Firefighter58]

I wholeheartedly agree with what Jim said, I had no pain at all when my tube was installed and the only time I have had pain since was when I waited too long to have a new peg put in and the old one popped out, after it popped out the pain was gone.. in around six months start to think about having your tube replaced
Al

 

[rmt]

We are home!!! Everything went very smoothly with the PEG insertion procedure. So far my husband hasn't had any pain, but we shall see how the evening goes. Currently we are watching baseball and he is doing a feeding. How I've missed being able to watch games with him, since he was always in the kitchen or basement trying to eat enough! We are both exhausted from the long day, but we are so happy and relieved to have the tube in! It is so great to know we now have a way for him to get the nutrition and hydration he needs. He looks so happy and so much less stressed! And I think this is the first time in months that I haven't had a stomach ache from worrying about his eating! I'm sure there will be some things to get used to with the tube, but so far, we couldn't be happier!

Thank you all for the support and encouragement! It gave me so much confidence in what we needed to do. I can't thank you all enough.

 

[Nikki J]

So happy to hear! Congratulations