Guest guest Posted September 27, 2002 Report Share Posted September 27, 2002 Our first experience with something "breaking" was very scarey - on a weekend, of course; but used tape and kept things together until Monday a.m. Since then, we just call the gastroenterology dept. of the doctor that inserted the tube, tell them the problem, and then go by and pick up the piece we need. They have been very good about this - even replacing the syringe and pump. Elaine Grimmesey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2002 Report Share Posted September 27, 2002 Hi all, This is Jane Koenig. Please don't be alarmed by my Yahoo " handle " . It goes way back to an original Chat name of CalamityJane. I do, however, sometimes feel that I'm living in a calamity zone! To the subject, this is for anyone has a PEG tube or cares for someone with one. Bill W., I'm hoping you may be able to chime in here. Background: My father has had a PEG tube since last November. He is currently being cared for by a coterie of private duty caregivers, 24 hours a day. Some are more careful than others, but I can't watch all of them all the time. The cap on the PEG tube is the current problem. It is held in place by a plastic strip attached to both the cap and the tube. The strip wears out and breaks, leaving the cap unattached. The first time it happened, I asked the caregivers to be careful to replace the cap when they weren't putting anything in the tube, but someone eventually lost the cap. This left the tube open to dust and dirt. We took Dad back to the doctor who replaced the cap. The doc said we could order replacement caps and put new ones on ourselves. A few months later, the connecting strip has broken again. The doctor had suggested I order these from Visiting Nurses. We are regular customers of their's for liquid nutrient and oxygen supplies, so they try to help us however they can. However, Visiting Nurses cannot supply this part and has no idea where to get one. I called the doctor's office back to try and find out who manufactures the PEG tube, but they had left for the weekend. Now I've been searching the Web, without success so far. Questions: Has anyone else experienced this problem with the cap on the PEG tube? How did you handle it? Do you have any ideas for obtaining such a replacement part? As an aside: Running Dad into the doctor's office or the ER has become a major deal. His primary caregiver says it's too difficult to dress him by himself. Last time I ended up paying for two caregivers for dressing and then undressing. Normally, Dad just wears a hospital gown and is either in bed or his wheelchair. Also, transfers have become quite difficult. (We decided against a lift because, when we did have one in, the caregivers didn't bother with it anyway, and it takes up too much space). I don't have one of those vans with a lift. The caregiver objected to doing so many transfers in one day (bed to wheelchair to car to chair to car to chair to bed). So I hired a transport service to take us to and from the doctor's office. All of this activity is also very stressful for Dad. The upshot is, I'd like to handle this without the hassle of a trip to the doctor's office. Any ideas? Jane Koenig Marietta, GA daughter of Fred with fairly late stage MSA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2002 Report Share Posted September 27, 2002 Jan, I have no answer for your problem, but I just wanted to say what a wonderful person/caregiver you are. My heart goes out to you, and your father is a very lucky man.. God Bless " tenacity's man " > >Reply-To: shydrager >To: shydrager >Subject: PEG Tube Supplies >Date: Fri, 27 Sep 2002 19:47:42 -0000 > >Hi all, >This is Jane Koenig. Please don't be alarmed by my Yahoo " handle " . >It goes way back to an original Chat name of CalamityJane. I do, >however, sometimes feel that I'm living in a calamity zone! > >To the subject, this is for anyone has a PEG tube or cares for >someone with one. Bill W., I'm hoping you may be able to chime in >here. > >Background: My father has had a PEG tube since last November. He is >currently being cared for by a coterie of private duty caregivers, 24 >hours a day. Some are more careful than others, but I can't watch >all of them all the time. > >The cap on the PEG tube is the current problem. It is held in place >by a plastic strip attached to both the cap and the tube. The strip >wears out and breaks, leaving the cap unattached. The first time it >happened, I asked the caregivers to be careful to replace the cap >when they weren't putting anything in the tube, but someone >eventually lost the cap. This left the tube open to dust and dirt. >We took Dad back to the doctor who replaced the cap. The doc said we >could order replacement caps and put new ones on ourselves. A few >months later, the connecting strip has broken again. The doctor had >suggested I order these from Visiting Nurses. We are regular >customers of their's for liquid nutrient and oxygen supplies, so they >try to help us however they can. However, Visiting Nurses cannot >supply this part and has no idea where to get one. > >I called the doctor's office back to try and find out who >manufactures the PEG tube, but they had left for the weekend. Now >I've been searching the Web, without success so far. > >Questions: Has anyone else experienced this problem with the cap on >the PEG tube? How did you handle it? Do you have any ideas for >obtaining such a replacement part? > >As an aside: Running Dad into the doctor's office or the ER has >become a major deal. His primary caregiver says it's too difficult >to dress him by himself. Last time I ended up paying for two >caregivers for dressing and then undressing. Normally, Dad just >wears a hospital gown and is either in bed or his wheelchair. Also, >transfers have become quite difficult. (We decided against a lift >because, when we did have one in, the caregivers didn't bother with >it anyway, and it takes up too much space). I don't have one of >those vans with a lift. The caregiver objected to doing so many >transfers in one day (bed to wheelchair to car to chair to car to >chair to bed). So I hired a transport service to take us to and from >the doctor's office. All of this activity is also very stressful for >Dad. > >The upshot is, I'd like to handle this without the hassle of a trip >to the doctor's office. > >Any ideas? > >Jane Koenig >Marietta, GA >daughter of Fred with fairly late stage MSA > > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2002 Report Share Posted September 27, 2002 Jane, We used a short (about 7inches) extension tube which we replaced about once a month. The caps never broke off within that time and we never used the cap on the PEG as it was only used once a month while we changed tubes. I may have some extension tubes around here, so write me off list and if I find them, I will send you some. You definitely want the PEG capped as a cough or belch will make a real mess otherwise. Do you have the flush to the skin type? Or does it stick out about 2 inches from the skin? Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2002 Report Share Posted September 28, 2002 Dear Jane: It sounds as if your father is in late stage for this disease. When the job of dressing Ken and getting him out became too much for out full-time caregivers, I asked his Neurologist if she thought it was time to talk to Hospice, and she said she thought it was and she made the referral for us. I talked to them and didn't decide to actually use them for a couple of more weeks while we tried a couple more things. When they finally began to come, things got a lot better. They sent someone several times a week to help bathe Ken and get him dressed, and the Nurse came to check on him at least twice a week, sometimes oftener. Medications were delivered to our door, and the Hospice Doctor came to the house when it was necessary. This was completely covered by Medicare at no expense to us. Ken did not have a G-tube, and I know Hospice people have some thoughts about that, but you can discuss it with them. As I understand it, there is actually no time limit on using Hospice services; the patient just has to be getting worse and the prognosis must be terminal. I hesitated to suggest this to you, but you would be under no obligation to use their services, and you would be better informed as to what is available in your area. Many doctors have a hard time bringing this subject up, but I heard an audible sigh or relief from Ken's doctor when I asked if it was time. Ken lived exactly 6 months and one week after Hospice started coming, and his last six months were very peaceful and pleasant for both him and the rest of our family. May God go with you, Barbara Quote Link to comment Share on other sites More sharing options...
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