My husband had a PEG tube put in on Monday. The dietician came Wednesday to start him on Jevity. Unfortunately I was having surgery Wed and just got home yesterday (Friday), so wasn't here to help. He has had only 1 can daily. He threw up clear liquid after his last feeding.

Besides that, our daughters and I have noticed confusion. He wanted to know if I was at the store when I was in the hospital. They said he was partly asleep. I need to watch to see if that's it or if we have bigger issues.

I think hunger and dehydration could cause confusion. Any ideas?

Right. Malnutrition, dehydration, medication, and a host of other things can cause this confusion or delirium. He needs to be seen by a doctor(s) for proper diagnosis, and treatment, since this is usually not a good sign for prognosis, actually can be detrimental.

Here is an arricle about mental confusion with cancer. Good luck, and hope you are recovering from your surgery.


http://www.cancer.net/all-about-can...ide-effects/mental-confusion-or-delirium

Malnutrition and dehydration are a dangerous combo and can require hospitalization. Every single day the patient needs a minimum of 2500 calories and 48 oz of water. If they throw up, that needs to be put back in so then its even more.

I cant stress how important it is to have proper nutrition and hydration. I ended up feeling so bad I actually was convinced I was dying. Turns out it was dehydration and malnutrition.

If a pump didnt come with the feeding supplies call and ask the doc for a prescription for one. This way you can set it up and the pump can run overnight making it much easier to take in enough. Is your husband able to drink at all? If so push him to drink water right away.

The most common reasons a person isnt tolerating the liquid formlua are as follows in no particular order...
1. speed Its being given too fast. Slow it down! Ask for a pump to keep it going slowing into his stomach. The gravity and push methods can be too much for some patients to handle.
2. thickness The consistency is too heavy and just sits there making his stomach ache. Water down the formula. For a 10-16 oz can, add about 3/4 of the can of water to the formula.
3. sit up The patient needs to be sitting still while being fed. If its with the pump, the patient must sleep propped up on pillows, ideally the head of the bed should be raised several inches. After a feeding the patient should sit still for at least 40 minutes.
4. formula If the above items dont cure the nausea, then it could be he isnt tolerating the formula. There are hundreds of different kinds out there. A dietitian can help find the right one for him. Sometimes they will have samples to send home to try so you dont have to keep buying ones that wont work.

Please call the doctor (they always have someone on call to take calls like this) if your husband isnt taking in enough. This can quickly turn into an emergency situation. Dont rule out a trip to the ER if he is in bad shape. Confusion can be a very bad sign! Its always best to err on the side of caution and get checked out.

Thank you. I will read in more detail at home. I called the doc and we were sent to the ER. Severe dehydration, but, other than low magnesium...or was it manganese? He was good. They said we need better training for the PEG. I would like a home health nurse to come for a few days. They are sending us home, we think, after 2liters of saline. But said to get 60 ml of fluid 4 times a day plus nutrition, daily.

I will tell them we need a pump. Not being at home 3 days meant I didn't know what was going on.

Thank you for your info and support!

His RO ordered the PEG. Should my first call Monday be to him or the MO? Or the dietician who came with home health care?

I will contact his boss tomorrow. Phil is worried b/c he's used up all paid time off. He has FMLA and short term disability. He's started sleep talking and he's usually working. A few minutes ago he was working on a wireless router, then woke up knowing he'd been doing that!

I think the drugs he's on are messing with his mind: Vicodin, dilaudid AND morphine. I'm frustrated and feel helpless since I can't drive even. His blood counts, etc. are excellent. Apart from the dehydration and the radiation burn, he's healthy. Sound weird each time the MO says that, but it's true, I guess.

Just got the okay to head home. Yea!

This is not how I planned to recover from a hysterectomy!

Phew! Your post made me very concerned!

Malnutrition and dehydration can very quickly become life threatening. Im so glad you called the doc and took him to the ER for fluids. It happened to me so I know how lousy you can feel when dehydration hits. Im hoping your husband is feeling much better after getting hydrated.

Your surgery was a major one and to me it sounds like you both could use someone to help you for at least 2 or 3 weeks. You need a caregiver yourself right now. Are you able to get a home health aid or visiting nurse for a few weeks? If not, are there any relatives who can visit for little while to give you a hand? Maybe someone from church or another organization. Think of all the people who offered to help you and said to let them know if you need anything.... its time to call them on it and ask for some help. Maybe finding a few people to each take 2 days and then rotate them for the next few weeks until you are back on your feet.

I know your husband needs a caregiver while going thru treatments. If you arent able to do it right now try your best to think of people who offered their help and take them up on it. Dont be shy or too proud to ask for help. Friends and relatives who said they would help are really there and just dont know what they can do to help you. Line up someone for driving and then have a back up. Call the American Cancer Society and ask for a volunteer driver. They can take your husband back and forth to his treatments or doctor appointments. I am a volunteer driver, after I used them a couple times when I got well I helped out others who needed a hand.

I would think your husbands radiation doctor or his medical oncologist is who can order the visiting nurse and feeding pump. If not ask for a dietitian to be assigned to your husbands case. They can be a huge help! Talk to the doc who is prescribing all those drugs. Does he really need to take all that or could he go on something like the fentanyl patch. That has specific instructions that need to be followed to the T, like no long hot baths or showers, never cut, tear, rip, bend or fold the patch. Change it every 72 hours (3 days) and always put it on a new spot. Then your husband could just take extra pain meds for any break thru pain. When taking strong meds like he is on, its impossible to remember when he took what which can lead to his confusion. Maybe a chart would help, when taking a medication, write it down when and how much so he will have a record and not take too much.

I wish I lived closer, I would help you both.

Good luck with everything, I know you have your hands full!!!


PS... For the radiation burns, ask for a prescription of Beta-Val cream. Pat it on his sore skin, never rub it in as his delicate skin can tear. Never put it on prior to going to rads. I would carry it with me and pat it on my neck on the way home from treatment, then again after a shower and before going to bed. By patting it on, it wont bother his sore skin and let it soak in. Its ok to walk around with it looking like a lifeguards nose (but its on his neck).

Is your husband taking in food by mouth? If not, one can of formula a day is way too little. Depending on the weight of the patient, it may have to be five or six cans a day. The dietitian should be able to do the calculations and figure it out for you. Give him water before and after giving him the formula -- you want to flush the feeding tube and it is a way of ensuring he gets the fluids he needs. John weighs 180 lbs and he needs six and a half cans of Nutren 1.5, and, in addition, 180 ml of water each time he gets a feeding. Even when he was still eating food and drinking, the dietitian told him to take in two cans of Boost Plus a day so that he gets the essential vitamins and minerals.

Thank you both for more info!

Christine, you are such an encouragement. Thankfully, we've had several friends and family offer to help us. Our kids are teenagers and while they certainly should not have to "run the house" long before my surgery we designated that one would do laundry & cook & the other would tend to dishes and deal with taking out trash. I thought those are pretty basic chores for teenagers to do. So far, though, since my surgery, we've had someone bring us food every day. Well, on Saturday, they just took us places & I ate from the vending machine while at the hospital(tasted good but SO unhealthy). They took our girls to their house & fed them. One stayed overnight & the other wanted her own bed. Today my folks came by & brought us food and another friend brought a huge bowl of fresh fruit! My folks are in their late 70's, but dad is a "do it right now" person still, so he used the weed eater in our yard & bought a new shelving unit for the kitchen, then put Mom & the girls to work in the kitchen! LOL! My only job is making sure Phil gets the nutrition down, and I can sit down doing that. Our 14 year old, the one who has planned meals to cook, so far has only made Mac & cheese & tonight spaghetti noodles. She said, "I would like to actually cook sometime." Oh, just recently a friend of mine from high school & I connected on facebook. Turns out she lives near us, goes to our church, and "happens" to be a home health nurse! She works with children, but knows about things so has offered to come by if we need help in the nursing area.

In the morning Phil remembered he had his weekly appt. with the RO, thank the Lord, so a friend will drive us to that. I really need to be there. I will add to my questions about getting some home health care esp. while I am recovering. I have down questions about feeding, confusion, pump, etc.

Today I made sure Phil got 3 cans of Jevity, and he got almost an additional liter of liquids (water & gatorade). I realized that it wasn't really enough liquid when it all added up, but if his stomach is used to the small amounts, I guess it's better to add slowly. I also asked him to try taking the non-narcotic meds during the day, but he'd already taken Hydrocodone, so I told him to try not taking that til bedtime again.

He actually thought he was going to WORK tomorrow. OY! Then he wondered why he couldn't drive. My goodness he's a stubborn one. I told him I didn't expect to be caring for an Alzheimer's patient when he's only 56!

Gloria, the dietician told me on the phone before my surgery that she wanted him up to 8 cans/day. If I can get down 180 ml of water with each can, that would be a good amount. I asked about the Gatorade b/c of dehydration & the ER PA said that would be good along with water.

I really wished they'd admitted him last night & kept him to be sure he was hydrated. I'll see what the RO says. The MO is in the same building, so if we need to we can go see him.

All I know right now is my Hydrocodone is kicking in & I feel woozy! SO thankful for this board, our friends & family. Oh, in addition to the friends helping us physically, I've not been able to work at my direct sales business (I hope I can share this just to share how wonderful people have been---NOT advertising!). To help us financially, one friend offered to host an online show to help us but also to keep my business alive. The show is over $1000 (I'll make 20-22% commission, I think, which will help cover some things). People I've never met are ordering all over the country. Just amazing that they are all so willing to pitch in to help us.

Good night!

Oh, we have a friend who lost his wife to cancer in 2010. He retired from work & continued homeschooling their daughter (who has some autistic traits/special needs). He not only brought us pizza---regular for one child & gluten free for 2 of us---on Friday night, but even brought some Boost so Phil could have something he could use in his tube! Now if we can stay out of the ER to stay home & rest I think I'll recover faster.

Thanks for the update!

I was concerned about you and your husband. Now I see you have plenty of help, you just need to get them to help with what you need for both you and your husband. I also had teenagers while I was going thru treatment. I had no caregiver and it was NOT easy! I ended up hospitalized a few times and it was not a good situation at all for me or my children. Call in the troops and let them help!

As far as your husbands nutrition goes, every single day he needs a minimum of 2500 calories and 48 oz of water. I know it sounds like alot but its a minimum so please find some way to get his intake increased. It really is that important!

Hope this week is an easier one for everyone!