I brought Dad home 3 days ago, after being hospitalized for a solid month (exactly Oct 8 to Nov 8th) for his botched up infected leaking PEG. It's still "Event" spilling about the sides. I can handle dumping his spit, giving him meds, blood puke piss...What I can't handle is packing gauze into his PEG site. I do it but I just freak to poke it in him. I doubt he will be home long-will probably take him to Mayo. He has visiting nurses but it's always a new person, with a new theory and a personal way of doing things.
His last Radiation was thursday. They wheeled him out and he was carrying the mask and I started bawling uncontrollably. I have the mask it's the most powerful object I have ever been near.
We buried my uncle yesterday, and a close friend's daughter was found dead in a bathtub in Mexico the other day-we bury her on tues.
I started smoking again-makes perfect sense, right?
We should be focused on recovery but it doesn't seem like healing with all these tube issues. I forget about cancer entirely. Cancer has been the abstract-"treatment practice" the reality.
Dad and I have become so close. He never was a talker and now he writes more words than he ever spoke. There is a coffee shop in the hospital right next to the radiation clinic. 35 times he went by it but wrote on the last time on his way out the door how good it smelled. "Does it cause pleasure or discomfort to smell the coffee?" I asked him. "Pleasure" he writes...This is my Dad has not once complained though he hasn't swallowed even water in over 30 days.
I'm sorry that I don't contribute to others on this site...Every step of this journey has been baffling-I can't give advice because it has all gone wrong. I dust myself off, I try to give him confidence and then it goes wronger..then wrongy..then wrongery then good news but slightly wrong, then everything we have done is wrong, poor thing-go home take a bath and have a plate of wrong.
I thought I could fight this with enough knowledge, or the right attitude, or determination. I am cracking. I am angry.

Hi, Mariam,

I am a caregiver to my husband and although things weren't as difficult as they were for you, it was really, really, really tough. It is a brutal treatment for most who go through it. The helplessness I have felt so many times as I see his pain, confusion, and frustration, plus the sense of loss I've had over missing my energetic, outgoing husband as he has spent weeks being nearly silent (but mucousy) - have added to this difficult treatment. I don't really know how any of us could be completely prepared as each treatment varies and unexpected things happen.

I am so glad that you and your father have become closer. Plus, I think it is a gift that you were able to lovingly help your dad through the mucuous, spit, vomit, etc. Not everyone could do that. I am glad that your dad's treatment is over and you can focus on the next stage. (recovery is difficult but several weeks out I have seen great improvement).

I will be thinking of you and your dad - Sophie

Oh Mariam i know that feeling!!!
Trouble is with this disease and the treatment,when it goes wrong ,it does it big time.

Like you i armed myself with all the knowledge i could find,but no where does it tell you what to do when nature intervenes and the wheels start to fall off.

Try to get some rest when you can and know we are all here for you when you need to scream.

love liz

Oh Mariam - your Dad sounds like such a great guy! And how strong and compassionate you have been for him. That you are even closer now is such a blessing. This horrible disease has a way of teaching us how to really appreciate our loved ones as well as even the smallest things we normally tend to take for granted. End of treatment and the 2-3 weeks following were the worst for my son and for me, but just knowing there is a light at the end of the long dark tunnel gives hope. Better days are coming. Each improvement no matter how small gives cause for celebration. Do try to rest and do something nice for yourself. You certainly deserve it. And keep in touch so we'll know what's happening.

Mariam, usually I try to post my thoughts carefully so as not to offend or upset- but the issue with your Dad's peg tube isn't right. If it's infected, then someone needs to fix that[not you]. They do leak, but normally, you do not need to poke gauze into the incision. As to the coffee, buy him a cup, let him enjoy the aroma, cool it down to room temp. and pour it in the peg. He gets the benefit of the liquids, coffee often helps the bowels move and he might get a "boost" from drinking it. You are having a really rough time. Caregiving in this situation is hour to hour-day to day and takes most of your strength. Remember, this can be as hard on you as it is on him [ I am saying this from a caregiver perspective]. It is important for you to vent AND it is important for you to try to find a little time to get some balance in your life if you can
[if only taking a bubble bath]. What are the Docs telling y'all now as to what his prognosis is? Is he totally finished with tx? I got a little lost in reading your tx dates. Amy in the Ozarks

JAM,
He finished tx last thursday and chemo was stopped 3 weeks ago due to the PEG. (They think the Erbitux was keeping his infection from healing properly). What happened is:

1. The PEG was not put in well (thank you intern)and was still too leaky a week later.

2. My mother was twisting it (like an earring) the second week because she thought the nurse had showed her to when she brought him back in

3. Then he was hospitalized on a notoriously badly run floor for his thrush infection he contracted a staff infection in the tube site which stretched about a foot and a half across his belly. His wound site opened much wider than the tube, causing gastric juice to fly out of it and burn his belly skin badly. -also a faulty valve (you know those two-way ones they put meds though) had the cap fly off several times and spilt all of him. -Though it took forever for me to get the nurses on the floor to agree to getting rid of it.

-At this point he went to intensive care
Then he went to a really good surgical floor and lived on IV's for a week for food and meds and infection goes away, but his skin is burnt badly-

4.They then think the Erbitux chemo was keeping his problematic tube from healing.

5. Meanwhile, the hole was enlarging but they don't make larger tubes, so they made a "junkyard tube" out of a catheter and a gerber baby bottle nipple while they waited for a special order tube that inflates to put in him.

6. Surgeon removed "junkyard Tube" and replaced it with new tube -bedside with me standing there...very much like the civil war.

7. Surgeon comes in every morning to check tube and pack vaseline gauze around the hole, and says "It looks good, the hole is getting smaller." For the last 2 weeks.

8. He finishes his radiation (which he continued for all but his one worst week) and the hospital lets him go with the understanding that his tube is bad, but getting better..Deal with it.

This has been an 12 week ordeal for the tube, 8 weeks to get through tx, and the last month of it, hospitalized because of the damned tube. Mom or I have been with him every single day.
He will be fine and then just erupt with bright yellow curdled stuff, or black bloody looking stuff. It can spill to his socks. He gets super agitated and freaked and rips his clothes off immediately. This happened 3 times yesterday.

Anyway, I brought him home thurs and we made an appt to see a gastroenterologist for tues. Here in the area and nothing to do with a CCC-because, frankly no one took full responsibility for this over there and he needs fresh eyes on his problem. I also think the surgeon was covering her ass by continually trying to fix it.
I can't begin to tell you the nightmare of his hospitalization.
As far as the treatment goes, he has finished and we have to wait a month or so-I don't have the date.

Unbelievable honey.
I thought I could offer some insight at the beginning of your post, because my husband also went through the horror of having his tube fail twice, replaced 4 times....etc. BUT....this is totally uncalled for.
Good for you that you've taken it out of what really sounds like an inexperienced, ignorant, or just stupid, doctor.
I pray that you can get some relief. I, like you, have had to put the "cancer" on the back-burner just to make sure that my husband makes it through the so-called cure.
Hang tough, babe, and please email me, if you would like to talk. I'm not sure that my profile works at this time, so feel free to contact me at [email protected].
Love,
Mandi

It sounds very much as if your fathers PEG tube site had broken down and formed what is called a fistula.This causes huge problems for a few different reasons,not least of which will be your dads poor general physical condition.The conastant leakage from around the site will keep the margins moist and make healing a very long drawn out process.
It is perfectly normal to have to pack a fistula as they are supposed to heal from the inside out wards,but the conditions reqired to aid that healing are good clean tissue formation and a clean wound site.Both of which i doubt your dad has.

If your dad has finished his treatment is there any chance of him taking any nutrition by mouth yet?because the sooner he can get the tube out i think the better he will be.

What a terrible situation for you all.

good luck liz

Thanks everybody,
Liz, he's really far from taking nourishment by mouth and still is using a suction machine. He had a terrible case of thrush which really put him back.

Mariam,

You and your Dad have really had a difficult time. I understand the food tube spewing because of the type of valves on it (varies as one type is less messy than other I believe). We got a valve with an extra opening in it with a cap that easily falls off on an opening we never needed and I can't tell you how many times the cap blew off just from my husband coughing from mucositis or retching and spewing stomach and liquid osmolite all over the place. As sick as he was, he'd rip his clothes off as well.

Just a thought about the feeding tube not healing. First, what you're doing by going to another GI doctor sounds great. You might want to seek help from a wound specialist. Staph infections are very difficult to resolve and as some have noted above, there may be more going on. My mother-in-law had surgery wound problems (including staph) and she was seen frequently by a wound specialist who did the bandages and whatever. I think it requires a great deal of skill once you have a problem.