Feeding tube

[Mtorres9235]

Wondering if anyone else with a feeding tube has had experience they could share. My husband ( diagnosed with CBD in 2007) has had his since 2013. We have put in about 3-4 tubes when they failed or have gotten too clogged. Now his hole needs to be placed in another spot. I am worried about the “conscious sedation” and other aspect of this apparently “easy” procedure. ( everything in italics is our general surgeon’s words. He is leaking from the site and loosing a lot of weight and nutrition. He still desperately wanting to hang on to life. I am his main caregiver( wife) and happy to support him. Any experience with this out there? Thanks.

[Dadshelper]

I had to look up conscious sedation. It appears he would be awake just have pain blockers and mild sedation to help keep him calm. If he has expressed his desire to have the operation to relocate the feeding tube then do it. There is an unknown risk of possible surgery complications and a known risk of not being able to use the feeding tube. My opinion is to fix the known risk and hope nothing else happens during the procedure.

Ron

[kenh1]

I would say you have to trust the surgeon. We had the opposite response where the surgeon refused to do the 'simple operation' because my wife had a DNR. So we had to live with a NG tube. You've done amazingly well in caring for him since 2007. You must have more experience then the rest of us on this site.

Admiration and prayers. Ken.

[Mtorres9235 in reply to kenh1]

I think we all are a journey that is our own. Ours has been a long and deep treasure. My husband wants to live and I have found how deeply I love him. It will be hard to let him go. Thanks for your words of support. I hope the best for you as well.

[kenh1 in reply to Mtorres9235]

Thank you for your positive reply. Like you I found my love for my wife deepened with every caring day. Now she has gone she is still with me through photos and memories, some of which are provoked through posts on this site. As someone once said to "me keep on keeping on". Ken.

[Mtorres9235 in reply to kenh1]

Thanks Ken. I am so sorry for your loss but so glad you found the depth and breath of what is truly meaningful. I am grateful for your compassion. No one can take away the sorrow or the joy when you have gone through this journey with someone.

[Mtorres9235 in reply to kenh1]

Thanks Ron. That makes sense.

[Jdjdjd]

My husband has CBD, and was diagnosed in 2009, but had been ill for several years previous, I left my job in 2009, as it was too stressful and I couldn’t live with Ian’s safety being compromised by my being at work, it is a long hard road, that’s for certain, he had a peg fitted in March of this year, and have had a few issues with the peg blocking, when I spoke to our nutrition nurse she advised that when doing the 200ml flush twice a day, to use warm water, so now I just heat it in the microwave, it seems to help as I find the feed solidifies, my husband has 1300ml daily, so 200 ml is emptied into the sink, and I have found that it blocks occasionally if I don’t flush with hot water, worth a go if you’re not already using hot water

Good luck with it all, my thoughts are with you

Janet x

[Mtorres9235 in reply to Jdjdjd]

My husband has had his peg tube for 7 Years. The problem currently is not blockages but the nutrition and water leaks around the site. The gen surgeon says we have done an awesome job with the current site but the site is only meant to be temporary. So he needs to have a whole different peg tube at a different site. We have been through some changes in the tubes over that 7 years when they failed or had become too dirty to clean properly. What I am worried about is the procedure and drugs used for conscious sedation or the fear it may lead to gen annathesia because drugs have a negative effect on my husband because of CBD. We had to take him to the ER on Friday and he was admitted to get intravenous fluids for low sodium. We have decided to go ahead with the new placement procedure due to lack of being able to give him proper nutrition because of leakage. Please pray for us. We appreciate it.

[kenh1]

We found the best solution to blockages was to hourly flush 60 ml of water at room temperature throughout the day. My wife was also catheterised and prior to this we used to get catheter blockages which were also cleared by the flushes. Best wishes. Ken.

[Jdjdjd in reply to kenh1]

Great tips there, I will try the hourly flush, it can only help

Janet

[Mtorres9235]

Had new peg placement. Now we are struggling with old hole closing. All water,drugs and food coming out old tube peg hole. So it is a slow process to get him back to where he was. I pray he survives. He is a fighter and I don’t feel like we have much support right now. Have to figure it out on our own. Medical staff thinks he should give it up. I am just really tired and wish we had someone on our side. He will fight to the end🌹

[Hidden]

Just read your posts. Please post how you are both doing. My husband has CBD since 2013. We are in NYC. You are both warriors.

[Mtorres9235]

Thank you for your support. We strive to do what my husband wants and that is to stay alive and thriving. Have endured a lot, grown a lot and have a lot of help. But mostly continue to pray on a daily basis that God will show us the way. It is amazing the things you learn how to do. Recently, after 6 years with a peg tube, the hole got so bad we needed to put in a whole new peg tube in a different site. That was a challenge. The old hole into his stomach is still trying to heal after after 9 weeks. He went downhill with the anesthesia and we had to deal with respiratory issues and other skin issues while his immune system was faltering. Once again, though, we are on the up side of this and he is responding again with yes and no and starting to stand, etc. He has always been a quiet “warrior” as a husband and a father. We are determined to help him live as long as the Good Lord wills it. We know that God will take him in His own time and we strive to not let him go out of neglect or apathy. We do a lot of advocating on his behalf. But we have found, over time, caring individuals who hearts are in it for the love of it. Which truly makes all the difference. Thanks again for your support.

[Mtorres9235]

Dear noteasyrc, Forgot to ask, how goes it with you and yours? You have been on this road for quite awhile, as well.