momals2008

Keep your fingers crossed, I'm interviewing a RN tomorrow that is very reasonable. I asked if she knew how to suction so I'm going to have him suction him. I hope this works out so I can get out at least a couple of hours once a week. He does have a DNR. That was a hard decision to make.

I live in SC. We have discussed the vent situation. He told me he would let me know when he could no longer take it. Of course that will be with blinks. I have to take him to the dr next week to have his trach changed. That will be an ordeal. Like your mom he gets very anxious. Found a great ambulance company that is excellent. Last time they coded it so the insurance company paid for it. Where is your moms pain? My husband has severe pain in his hands. I guess I didn't read the chapter on pain. I don't want him to suffer. Giving him Lortab and in between Tylenol. I do have some morphine I will give on occasion. When he first started taking Lortab I was concerned about liver damage. Then I got to thinking - so what. He can't take OxyContin it makes him crazy.

.. the np told me to give her the tylenol with codine 3 times a day now instead of two a day. I get a bit annoyed when people ask me what I plan to do with my mom I tell them nothing I dont plan anything im not GOD and I am not gonna take a guess at if she wants to be disconnected from the vent. We never spoke about it she doesnt have a dnr and I dont feel right asking my mom about it.i live in nj what state do u live in

Wow that is alot of work I thought ur husband was thin like my mom. How have u maintain his weigjt my momwas 205 and now weighs about 70 pounds. I think thats so hard on people when they r sick and have to wear a diaper. I wish I lived nearby so I could help u. I know how u feel. I never used a hoyer lift for my mom I always carried her from the bed to the recliner and would get horrible back pain. Now she is not heavy at all. My mom doesn't go out at all except for hospital maybe once a year she cant sit up on the wheel chair she has no control over her neck. I had to call my mom's nurse practitioner today because my mom seems to be in pain her pulse was 125 and she was makin faces as if something was wrong. Her normal pulse is 60.

No I don't have any help per se. A CNA comes over to bath him and help get him in the chair with me helping of course. My sister, who lives 2 doors down, comes and helps me pull him up in the bed. She will sit with him every other night so I can take a 5 min shower. He is still a big man 200 lbs and he has maintained his weight so far. Joe is on a LTV 1150 vent. He has a permobile chair but he's only gone outside once since on the vent. It makes him too nervous. How about the bathroom situation? He can still use the urinal but can not raise up to be put on the bed pan so that is done in the bed with a chux underneath him. I know he is humiliated. Forgot to say my sister works 2 part time jobs so her help is limited.

Our lives sound so similar. You do so much do u have any help

My mom is on an ltv 950 ventilator if I see her numbers r low like anything under 300 then I check for leaks I add air to her cuff.... my mom cannot speak or move I dont know if she regrets the trach we never got to talk about it. My mom's trach gets changed once maybe twice a year because its so hard to get her to the hospital. She gets anxiety attacks when the ambulance comes I do know how to change the trach I know this because one day my mom's trach popped out while I was moving her and I had to put it back in... I wish the rt could come and change her trach at home. My mom is calm but sometimes when her meds wear off she gets upset like panic mode. She is on ativan and blood pressure medication zoloft and tylenol with codinefor pain which makes her constipated. I feel so bad for my mom she is so thin she is all skin and bones. I pray that when the time comes she has a peaceful passing I dont want her to suffer.

Joe could speak at one time but he is now having trouble (reason for bell) which he has started using quite a lot. He seems to get agitated, irritable and sad all the time anymore. I can't blame him. Yes I do have an ambu bag that I have been using a lot lately. He was having breathing difficulties today so I called his rt. Thank The Lord he lives 3 miles away. He came over and said he has a leak in his cuff. Do you change your moms trach? If so how often? The last time he had his changed was when he went to the ER with a mucus plug. That was 2 months ago. I have to get an ambulance to take him. I have more strength than I ever thought imaginable. You just do what you have to so. Does your mom regret having the trach? Is she in any pain? Joe's tendons in his palms are protruding and causing him an enormous amount of pain. He takes Lortab.

Do u have a baby monitor does ur husband speak or able to communicate with you. Im sorry if I ask so many questions. My mom used to be on rilutek but after speakin to the nurse practitioner we decided to stop it. That medication cost alot of money and honestly I dont think it slowed my moms progression.

Do u have a cough assist it helps with mucus and also an ambu bag u know the one with the bubble that is gor emergencies the rt taught me that loosen mucus. I get 350 in foodstamps and I got helps with my energy bill and water bill from als guardian angels u can find them online.

When I shoot the saline in the trach I take my mom off the vent for a few seconds so yhat the saline goes downmy home is a duplex my bed room is upstairs when I do sleep in my room I leave the door open but thats after years of sleepin almost next to her I realized I can sleep in my room sometimes. My mom also had a bell and in august of 2011 she was ringing the bed alot I mean even in her sleep so I took it aeay for like a week I didnt think she really needed it since I was always in the room with her or next room but the following week when I gave it back she couldn't move yhe bell anymore. Some days I feel like im just over it I dont know how to explain this feelin its like I just except things this is my life and I cant change it... I am very creative anddont know anyone else with als so I tend to just figure things out.

as for the mucus plugs, I fight them a lot. I will have to mention what you were talking about to his doctor. The high peep alarm went off for the first time - scared me to death. Spoke to his RT and he told me to make sure there was no water in the vent hose. Sure enough there was from me shooting saline bullets down the trach. It seems like it's always something

So glad I found you. You seem to understand what I'm going through. Joe is on ss disability and I am receiving my ss now. In the state of SC if you have any little bit of money you don't qualify for anything. I haven't been out in a month and the last time was for only 2 hours. The cost of a LPN is 36.50 an hour. No one (CNA) is allowed to touch the vent. My heart goes out to you because of your young children. I know you are torn in many directions. As for resting, I do try to take a nap when he does. I sleep on the sofa so I can be there for him. He has started waking up a lot at night. He has a bell. We have a two story home so sleeping in my bed is out of the question.

How in the world have you done this for so long. I'm mentally and physically exhausted at the end of the day. Do you ever get out? I find that once you say ventilator no one is willing to help. Can't much blame them. It's a lot to ask of someone. Please share your secrets. Debbie

You are in my prayers. Kim