g-tube nightmare

[Plumeria84]

Hi !
I'm new to this board so I'll say a quick intro.
My husband was diagnosed with ALS in Aug 09 but we started the whole testing process in Aug 08. I'm his only caregiver, we have a son who's 3yrs old and I work part-time from home (I'm sure a thread asking for advice of how to balance all this will follow shortly, lol)
But just wondering if anyone has had really bad experiences with the g-tube ? DH's was placed Jan this year and from day one has been a true nightmare. Sleep was pretty much non-existent around here even before that but afterwards it got much, much worse. So 2 doc follow up visits and 2 ER visits later his tube came popping out in the ER after they pushed on his stomach as they were getting ready to place something into the tube so they could do an x-ray to check placement of balloon. DH has been complaining from the beginning that something just didn't feel right.
I've heard of the tubes coming out before and that as long as you get to a hospital w/in a few hours they can replace it no problem but I've never heard of the balloon coming out of the stomach and working it's way out to just below the skin.
Needless to say, the tract had healed so they couldn't just replace the tube and DH said no way to doing the procedure all over again.
He is still able to eat but the last few days he's been choking on his food quite a bit and it just sorta brings me back to reality that as much as that tube was just a horrible thing to deal with I don't know how long he'll be able to eat. For now, he's saying he does not want to get it put back in and I'm ok with him making that decision but I can't help but get nervous about how he will handle this procedure again since 1st time around was so horrible and felt like he barely made it. So I guess partial my question is how did your SO recover ? How long did it take before they were back to their normal routines w/out pain (DH is in a wheelchair so it's not like he was walking around before) but even transfers from wheelchair to recliner were extremely painful for at least a few weeks.
Sorry, I think I'm just rambling at this point. I've vented to family members/friends before but just feel like I have so much to get off my chest knowing that the people here have gone through what we are going through.

Thanks

 

[themommy]

Good luck trying to balance a full life..With a 3 year old. - That indeed makes me smile. I don't know the answers to the questions you have asked - we are in a similar situation in St. Pete. (No three year old - but two teenagers!) So its nice to know that you are close by. I pray for you and your family. I know how hard it is to watch them struggle. Try Puree-ing food so choking isn't so hard. Michael (my PALS) is learning to deal with it too. Also try to have him tip his chin down when he eats.

 

[panguinjen]

Interventional radiology put in Rog's tube with minimal anesthesia and no balloon... Less pain, formula only...
I'm sorry you are going through this... The balancing act is so hard with adults, adding an active little one to the mix makes it harder! Praying for you as you work on this.

Jen

 

[LizT]

Most folks recover within a few days or weeks. Im so sorry this is going on. Please keep in mind, that right now your hubby may have the option to hold off on getting another one, but that may change. Once someones breathing drops below a certain level, it gets more and more difficult to have the surgery again. There is always a chance of the meds causing breathing issues, and then the patient may need to be put on a vent. The general rule is that the earlier you get it done, the easier the healing is. Do it while the person still has strength and all that. Also, about the breathing issues and surgery- many dr.s simply WONT do it if the breathing numbers are too low.
Hang in there and best of luck to you.

 

[Plumeria84]

Haha, yes, it's .... intresting, trying to balance caregiving and a toddler. But I'm can't imagine teenagers being much easier !

Sometimes I just feel so guilty that I'm not the mom I've always imagined myself being because being a caregiver does come first in a way.
I think we've both wished a thousand times we had a child earlier so he could enjoy being just a 'regular' dad. But ofcourse, we never imagined ALS in our worst nightmares and he was only 28 when he got diagnosed. It's been a challenge for sure, but I'm certain seeing that little face is the morning is what makes him want to get out of bed each day.

My husband's name is Michael as well

Yeah, I think that'll have to be our next step (puree) but Michael loves good food so I think that's a really difficult thing for him to accept. But you're right, sounds like it may be time to start doing that most of the time. Meals take us such a long time, like 40 mins of me feeding him each time, pretty exhausting for the both of us.

He did have his placed by IR as well but I didn't know that there was an option w/no balloon. They discussed 2 options with us and decided that was the safer way for him to go. But at this point I'm not sure he even wants to consider placing it again - or at least not anytime in the near future.
But thanks for the puree idea, I have no idea why we haven't thought of that by this point.

 

[themommy]

Its hard - I know. My Michael is ITALIAN. Imagine an italian that can barely talk and has trouble using his hands! AYE YI YI!
lol! He loves to eat too - and pureed pizza - is not the same. Just sayin....
Who in their right mind - would ever imagine ALS...Maybe in some horrific nightmarish - dream....But so young...wow. That's really hard.
Take care of yourself...we will be talking soon I hope....Hug the baby....LOTS!

 

[lovedbygoldens]

My mom had her Peg tube placed almost a year ago and the procedure went very smoothly and she had some mild discomfort for a couple days and no discomfort at all since. Good luck. Hang in there!

 

[Barbie]

my husband refused ot get a peg tube. I have been pureeing food for at least 3 years. it doesnt bother him --he has me blend it all together and says that's what happens anyway! We started out by just chopping very finely,then all soft and smooth foods, then moved on to food processor. i have found to stay away from carbs -pastas, rice, breads since they make it way to thick and hard to swallow. I add just a little and stick with meat and veggies mostly. Still taKes forever to feed him but hedoes not choke as much. He also has a problem with dairy products, they make him choke really bad--lots of mucus. we avoid them too.

Remember, it is all his decision--all you can do is support him. Good luck!

PS--4 teens here and think that teens and toddlers could be the same thing...

 

[DeansWife]

Welcome, but sorry you have to be here. My Dean had his Peg tube procedure done two and a half weeks ago. He had some discomfort at first but now it's healed and today the neurologist pushed all around it and it didn't bother him at all. He had his done by a gastrointerologist. He was lightly sedated. Good luck and if he does change his mind, look at both options if your doctor approves. Our kids are all grown up and we now have great-grandchildren! I can't imagine dealing with this and children. You all are amazing women to do it. My 6 year old dog demands enough!

 

[Plumeria84]

Liz, that is definitely a big concern. He was still able to eat pretty well so we felt like we were doing this ahead of time but his recovery was so terrible it really makes me nervous about attempting to do this again, even a few months down the road. We went to Mayo in JAX and they did not want to sedate him after seeing his breathing test results.
Seeing the local doc in ER after the tube came out he said he would have sedated him and placed it better. The opinion of 3 local doctors he saw during his stay was that it was placed wrong - it was at about rib level, way too high. Michael went into a choking episode during the procedure so the local doc think the Mayo doc may have panicked a bit and just didn't place it very well.
So who knows, maybe the placement of it had everything to do with the terrible recovery but it was just such a nightmare for 3 months. No sleep, constant pain - I seriously about to go nuts from exhaustion.
It sounds like for most getting the tube was not extremely painful/long recovery, so something was definitely wrong.
I literally couldn't touch that tube without causing him pain yet doctor after doctor told us "everything looks great".

But you're right Barbie, whatever he decides I will support that. And we are very close to having to puree. I try to cut things really small and make mashed potato extra smooth etc...but he loves his meat so I'm thinking at least that needs to be pureed (sp?)
And 4 teens, wow !

Themommy, haha...yes, bad combo

 

[brooksea]

I'm very sorry you and your husband experienced this. I can relate. If he does decide he would like to have the PEG placed again, make sure it is the EXPERT and not the resident. My husband had a similar issue with his tube falling out. After going through a LOT, the tube was put back in by the EXPERT. If your husband's was done by a resident, find out who is in CHARGE and absolutely have them do it. My husband recovered fine from the last placement. I would like to add that if he is covered by Medicare, and he doesn't have the tube he will not be able to get the formula that is 100% covered and thus will lose calories due to choking and length of time/effort it takes to eat. If he just gets the tube placed again and drinks the formula and pureed foods til he can't, that would be great. Then he can go to tube feeding overnight. That's what my husband did.

If your husband chooses to not have the PEG placed again, he will lose weight and strength. You will need to puree everything to make it easier to swallow. You will also have to crush medications or get liquid forms.

Y'all are so young. I'm sorry you are having to deal with this. Just not right.

Strength to you and your husband.

 

[themommy]

Barbie - good gravy - 4 teenagers? You must have the patience of JOB...I have two teenagers - High School Orientation last night...Seems like yesterday and she was a baby..Time flies doesn't it? My oldest son is in college at FSU. My two younger ones are at home. She is 14 going on 40 (years old) and He is 13 going on 6 (son) LOL! As long as there is X box - I will have a son living at home....HAHHAHA! Thanks for the heads up on the pasta. Was going to blend it... but will just cook it until it is squishy...

At Plumeria, I hope if he decides again to get the tube that it turns out all right. It sounds like it was a botched insertion. Let Micheal heal up some and then ease into the conversation again...In the meantime - carb him up! Milkshakes! With protein powder!

 

[Barbie]

we got started on the meat by grinding up things like taco meat so it didnt look so unappetizing, and then I fed it to him out of the shell (shell=no no) . also ground up chicken and made chicken salad--looks close to normal and tuna salad too. I think men are less grossed out by the looks of food as long as it tastes good! I do give him rice and pasta, but not much. Oh, and bean dip! add the fat and chees and yum yum. He eats alot of poached eggs and cheese omelets and soups that are blended too, oatmeal with nuts and fruit added and blended, yogurt, icecream, applesauce... also try Benecal (order on line) to add tasteless calories to anything. 300 cals in one ounce... don't wait to start pureeing the food if he is choking.

the Mommy--GO GATORS

 

[Plumeria84]

Thanks for all your advice/food tips.
Is formula suppose to be covered 100% ? That's what we were told at the Mayo but when the company that was going to supply his formula said it would fall under the 80/20. We ended up only getting a week's worth (which was not even used because the formula caused a burning sensation and gas) but I don't understand why it wasn't covered 100%.

 

[brooksea]

What insurance policy does he have, straight Medicare, a Medicare Advantage plan or private insurance? Look at the policy or call the insurance company directly. Some Medicare Advantage plans are tricky with benefits, but some providers are also know to commit fraud. Check into it, as it should be covered 100 with a feeding tube.