My dad is down to 130 pounds and was admitted in the hospital a week ago because of dehydration and mal nurishment. We tried to do everything to get him to drink his boosts, ensure and all the others. He just can't do it anymore. we convinced him to get the feeding tube and and the procedure was scheduled for last friday. they tried to put the thing in his mouth to put him to sleep and they couldn't fit it in because his mouth is too swollen and his range of movement in his jaw is limited. so the dr. pulled out and said it won't work and it was too risky because his nasal airway was too swollen already and would close up with surgery. now we are left to force my dad to drink this high calorie drink (5 a day) to survive. I'm so upset about the lack of quality care. I feel like the peg should have been put in a long time ago before this type of complication could happen. now we don't even have the option. my dad is 77 and very confused and very scared. Any advice?

gulia,

i am so sorry to read what you and your family are going through. is there a chance you can talk with a different set of doctors at his current hospital or talk w/doctors at another hospital to find a solution? if need be, transfer him to a hospital where they can help him. I wish I had a better understanding of PEGs and NG tubes to provide you w/better info, but my knowledge is limited. Although, if I'm not mistaken, they don't necessarily have to go down the throat to get a PEG in. I believe there is another method done abdominally. Again, I'm sorry I don't have better answers.

Dave

I agree the PEG should have been put in before this point. This sort of thing is exactly why it's a good idea to get a PEG before rad starts even if you hope you won't need it. I don't really know all the different options for PEGs either but it seems to me there must be *something* they can do to put in a feeding device if his mouth is too sore and his jaw too tight......meanwhile, do force him to drink that drink. It may be hard but it is so necessary....

Nelie

A peg tube is inserted through a small incision in his abdomen, it is not the same as the nasel gastric tube that they attempted. I don't understand why they wouldn't try that.
If he is still in the hospital let administration know that you are upset with the quality of care and want an explanation of why he is not a candidate for the PEG tube. Dave is right about asking to talk to another doctor for a second opinion, this is a very serious situation.
If you still don't get an answer that makes sense you can make a complaint to the state health department as quality of care is regulated and patients have rights.
You didn't mention if he is getting anything for the pain, that's another basic patient right that is sometimes ignored. My husband found the duragesic or fentanyl patch was the only thing that worked for him. Are they addressing the mouth sores?
The jaw tightness is called trismus and there's good information on this website about that. Stretching exercises are crtical and a therabite jaw exerciser is often prescribed.
Are they giving him IV fluids for the dehydration?
JoAnne

Until they can get this resolved can't they keep him admitted and feed him via IV. My Mom had that for over a week when she suffered from the irratractable vomiting caused from the chemo. I forgot what they called it but it was nutrition via her IV port and they used it in addition to her fluids.
I hope they can resolve this quickly!
Tami

Tami is right, it's called TPN and it is given IV via the port. TPN can also be done at home and a referral can be made to a home care program and an IV pharmacy, but all that should be resolved before they attempt to discharge him.
Patients also have the right to appeal hospital discharges they don't agree with through the state peer review organization. It's called somehting different in each state but they should have given you a patient's bill of rights when he was admitted that lists the phone numbers for complaints. Usually you tell the hospital you disagree with the discharge and want to file an appeal if it comes to that.
The basic issue is how can we make sure that this is resolved and he doesn't develop dehydration and malnutrition again.
JoAnne

My husband received TPN through his Mediport and now through his PICC line. So far he has been on it for 8 weeks. It only provides 1600 calories but it does keep him hydrated. He lost 45 pounds before starting TPN, but his weight has now stabilized. He cannot take anything by mouth yet.

Since he hasn't improved otherwise, we inquired about a PEG tube so he could get more calories. The oncologist will speak to the GI dr. on Monday, but expects they will insert the PEG abdominally instead of through his mouth. He has the same issues with trismus, etc.

Perhaps you can inquire about abdominal insertion or at a minimum request the TPN. I hook up his TPN pump once daily and home health visits once weekly for labs and needle or dressing changes. It did have to be pre-authorized by insurance and is recertified every 30 days.

I think the thing that upsets me the most about this, is that very early in the process the patient ws not informed of the trismus issues, and was not on a program of stretching the muscles of the mouth right from the get go as treatment started, to prevent this issue of not being able open his mouth more. Getting a peg does involve an upper endoscopy which is of course done with an air pump and very bright light so that they can hit the right spot when doing the surgical incision from the outside. Like the trismus, the doctors should have been thinking ahead of the curve and put the PEG tube in long before inflamation in the patients throat and airway issues became present. Mine was put in the second week of treatment (I complained that I didn't need it or want it at that early stage since I could still eat by mouth) but by week four I was unable to eat by mouth and glad it was there. I was on it for 13 months with severe complications from the radiation... something they had no way of knowing my body would respond to in that radical a manner early in the game. So that is why I am such an advocate of the PEG. You don't know how any particular patient is going to react, and if it is severely, it can be too late to put in the PEG unless treatment stops, so inflamation goes down, and that is not a very desireable thing to do. Please post where the treatments are being done at.

Hi,

They told me that they would put the PEG tube in with surgery if I didn't get it when I began treatment. I am under the impression that they can do it with out going through the mouth.

Hope he gets the treatment and car ehe needs.

Brian,
When my PEG was installed at MDACC I don't believe that there was an endoscopy. As I recall
(of course they probably gave me Versed )the radiologist just punched a little hole in my abdomen and inserted it.

Others,
As Brian knows I too am a big believer in the PEG. I was totally dependent on mine for months, and, like Brian, kept it much longer than anticipated...almost a year.

Danny G.

Gulia,

The "through the mouth" part is probably the airway to make sure he maintaines his breathing during the surgery and the doctors don't want to risk losing him on the operating table.

You didn't mention if your father had a mediport or PICC line. I was on TPN feedings for multiple months because I even vomitted from anything in the PEG tube. They waited until I was down to 135 before they started the TPN (from 216). They can actually boost the calories to anything they want based on doctor's orders. I was something like 2,500 calories.

Find another doctor to at least give you peace of mind.

Ed

There are various techniques for doing this procedure. An upper endoscope when you are under is a minor thing, and since it is inserted when you are under (so you don't gag on it all) would not be noticed by many. A bright light transilluminates right through all the tissues and allows the GI doc to position it in exactly the right insertion spot in the stomach (He can see where he is on a video), and then from the outside the incision is dead on. No peg too low or high in the stomach which causes problems. I suspect that some doctors have done so many of these they could do it in the dark with a blindfold on, hence the various different experiences.

Hi all,
Thanks for the replies. My father is being treated at Kaiser in Redwood City, ca. Things have gone from bad to worse since my last post. Dad was sent home yesterday because his vitals were "normal". He has had horrible uncontrollable diarea for 2 days now. Blood in his stool and hemroids. He is drinking nutrin 2.0 500 calories each can and they requested him to drink 4 per day. As well as water. He also has thrush in his mouth. My sister came yesterday from Santa Rosa to take him to live with her. A nurse came out to the house today to check on him and will be back on Friday. He's forcing the Nutrin down but it's very hard for him. I just can't believe they sent him home in this condition for us to handle. I too requested a peg to be put in at the very start of this journey. The surgeon looked at me like I was stupid or something. He said it would be dealt with if needed. We have been suffering with him every day and the radiologist at Sequoia hospital Redwood City also seemed to ignore our concerns. Everybody acts like all of this is normal procedure and "what's the big deal" attitude. I am over the top upset and am filing a complaint at Kaiser but the bottom line is my dad. We are going to get a second opinion. If anyone of you know a good Dr. to reccomend please let me know.
Thanks

Gulia.
I know this might be kind of far from you but I will give you info. anyway.

I went to the Mount Diablo/John Muir network and cancer center in Concord, CA. I know Kaiser uses this facility as well as Pacificare. The facility is really top notch. My doctors also talk and consult with the doctors from Stanford. My oncologist has been great- Dr. C. and I love my ENT... Dr. F. at John Muir. I have been soo happy with the care they have given me.

My oncologist told me about the peg right away as well as my nutritionist who is a big advocate.
I didn't need it so I opted out. But anyway, I hope this helps.

I am sorry to hear about your Kaiser experience. Unfortunately, it is not the first time I heard something negative about Kaiser.