|
TPALS Home Stories: Diagnosis Stopping driving Going to a wheelchair Positioning in Bed Feeding tubes Using a BiPAP Getting a trach Life on a Vent Power outages Resources: Communication Aids ALS Links.com ALS Survival Guide ALS Links More Links ALS Association MDA Misc. Issues: My Meds My Treatment Dr. Meagher & Pergonal Ron Leeb & ricin |
Page 1
Page 2
Page 3
Page 4
Life on a Vent: Abaya
[ed: This is from 1996. He's still going!] While choosing mechanical ventilation is a highly personal decision and I firmly believe no one has the right to judge anyone elses "quality of life" I must emphatically say that it was the right decision for me.
Abaya Life on a Vent: Mark and Susan Our doctor sat us down and "warned" us that we would have to turn our home into an emergency room if Mark went through with the vent. He was really good to stress all the work it would be and tried to make sure that Mark wasn't choosing the vent because he thought it would be a "sin" if he didn't. However, Mark assured him that he just wasn't ready to leave his family and friends. I guess Mark never considered anything but whatever was necessary to continue on. I really admire his strength, courage, and patience. Our experience has been a good one (good in relation to the alternative of course). I know Mark isn't sorry that he did it. I'm not either. I'm just glad he knew all along that he wanted to survive. We never really questioned whether to do it or not. When the doctor asked me about it, I was hesitant as to whether we could do it or not. That's why he decided to come over and talk to Mark. That conversation left all of us with no doubts that we were going to do it. I don't think Mark ever thought to do otherwise. We have managed very well. The three years prior to doing it were so very difficult and stressful that the trach procedure calmed things down for us. Mark's health was overall so much improved and it gave us predictability. New routines and cares, yes, but everything was manageable and without the stress of waiting for the next life or death crisis. We like the Portex [brand of trach tube]. It was longer and gave us a better fit. However, Mark's trach site is TOO tight. I have to pull so hard to get it out and push so hard to get it in. I just discussed this with the doctor. He's going to send us to the surgeon this summer to see if the scar tissue might be trimmed to loosen up the opening a bit.
Mark and Susan Life on a Vent: Mark and Susan - daily routine After the trach surgery I was determined to get Mark home. So the RT's taught me how to do trach cares, circuit or tube changes, and how to do vent checks. Trach cares involve changing the trach site dressing and cleaning with peroxide once a day; the inner cannula (a small tube on the inside of the trach system that needs to be changed and cleaned daily); and how to change and wash the circuits or tubes that hooked Mark up to the vent. We also learned to monitor the ventilator systems (check the settings to make sure nothing gets moved accidentally) every three hours. Now we do this at the beginning and end of every nursing shift. The vent checks take about 3 minutes. The trach dressing and inner cannula changes takes about 3 minutes. The tube/circuit changes and washings take 20 - 30 minutes a day. You do have to empty water that collects in the circuits and tubes about every hour or two. This takes less than 30 seconds. [ed: Here in my hospital the circuits are changed once each week. They throw the old one away. Experienced folks can do it in 10 minutes.] We also hired LPN's to work nights 11 pm to 7 am. This was important so that I could sleep through the night. By the way, I trained all of the LPN's how to change the circuits and delegated this job to them. However, you should do it enough so that you can do it in your sleep :-). We learned that in the hospital you do cares and use sterile equipment much more than you need to when you are in the home setting. Keep this in mind when the hospital is teaching you the "right" way to do things (use their suggestions as guidelines and your common sense for home care. The RT's also started us into a routine that we believe has saved us from lung infections. They taught us to do passive postural drainage. The hospital from our home town gave us a hospital bed that does the Trendelenburg position. That means we can raise the bed, flip a switch and lower the head of the bed so that Mark is elevated at an angle. We turn him on his right side, put the bed into position for about 20 minutes, flip him over to the left side, suction his trach, and wait another 20 minutes. This allows all the mucus to drain into his trach so we can suction it out. We use to do this procedure 4 times a day. We cut it down to 3 times a day and Mark has never had pneumonia or problems with reoccuring infections. The whole process takes about 1 - 1 1/2 hours depending on how long he stays in the head down position on each side. We do it before bed, in the morning when he wakes up, and in the afternoon. You have to arrange your feeding schedule around these "treatments". We don't like to do postural drainage too close to a feeding. [ed: Turning a PALS with a full stomach may make him throw up. Also, not everyone needs so much care.] My nurses have plenty of down time when they are working. I tell them to bring crafts, books, etc. I also set them up with their own TV and VCR with mono headphones so they can still hear when Mark needs them but doesn't interfere with what Mark wants to watch, listen to, etc. Mark also likes to read, but someone has to turn the pages. We just got a dedicated communication device that allows Mark to talk again and run his own TV, VCR, CD Player, Radio, etc. That's been great. He has the remote back though which is dangerous you know. :-) I do Saturdays and Sundays alone except for night cares. I have plenty of time to relax, do laundry, and house chores, as well as school work, but then I don't have a 7 year old to chase after. [ed: Susan works as a teacher.] Mark needs oral and trach suctioning. Oral suctioning maybe once an hour and trach suctioning really depends on the day. Sometimes he goes hours without needing any and other times he may need it 3 times an hour. If his trach gets irritated then he needs more suctioning. All in all, Mark can NEVER be left alone, but it isn't continuous care. I have him hooked up to a chime alarm so that he can get my attention, unless his computer is hooked up. He's also not a demanding person. His parents both have learned to trach suction so that they can come over and visit so I can do errands. ANYONE WILLING can learn to do it. However, they won't let nurse's aids or anyone that works for you on a professional basis suction due to liability. They have to be at least LPN's to trach suction. Many of my LPN's had never had experience with it and I trained them. [ed: In California you can train any family member, friend, or privately hired care giver to suction or do anything. But licensed people you hire through an agency have to work within the limits of their license. Check your local regulations.] Ordering supplies takes about 10 minutes each month. The service that provides the ventilator delivers supplies once a month and checks out the vent. Mark was lucky and didn't need to have oxygen. It is very good if you do not need oxygen support. I hear that an oxygen concentrator takes a lot of maintenance and care. Mark breathes room air. We do have an oxygen tank available and on occasion he will ask for a few breathes (during football games when he gets too upset at his team). I've threatened to turn off the games if he doesn't behave, however, now he could turn the game back on with his computer. We also do range of motion exercises 5 days a week. My day nurse exercises his arms, legs, hands, feet, fingers, wrists, etc. I think it takes them 20 - 30 minutes. I don't do it on weekends, call me lazy. My day nurse also does Mark's oral cares. That takes about 10 minutes. We learned to travel after reading Charlie Wedemeyer's book, "Charlie's Victory". It's a must read. Very inspiring, positive, upbeat, you will laugh and cry with them. Plus they also give you a great breakdown on what it's like to live with it. I highly recommend it. I decided that if they could travel on airplanes, I could get Mark in the van and take him to my home in another state. This trip has turned out to be the highlight of our year each summer. As far as going to movie's, shopping, etc. Yes, we love doing it. We take him, his wheelchair, the vent on a vent shelf, a portable battery suction unit (like they use in ambulances) supplies, etc. The vent is relatively quiet. Suctioning can be noisy and I make sure there is a place I can move to if I feel we will be too loud. We have learned to have everything on a battery back-up. The vent will come with battery back-up. We bought a generator to be prepared for power outages. You shouldn't burn candles too close to an oxygen tank so we bought battery lanterns for light, etc.. A communication system is necessary too. We have a manual communication system we use that is the best! You don't need electricity for it. The computer is nice now too.
Mark and Susan Life on a Vent: Another Susan My husband has been home on the vent since the end of December 1997. Although it has taken a major reorganization of our living space, such inconveniences matter little next to the comfort of having my husband safe and close by. The relief for all of us, my two sons and myself as well as my husband, is in not having to constantly be in fear of a breathing crisis. Strangely we feel more settled now that we have in a long time. He actually felt stronger, and can eat better since he has been on the vent. and in fact, after a few months, found that he was able to go off the vent for periods of time. And best of all he can be a daily part of our family. I do want to add however, that our insurance company pays for round the clock nursing because my husband is ventilated. This makes a huge difference. We are able to spend lots of time with my husband, but I am able to go to work, and spend some time with friends and relatives. You did not mention if this would be the case for you. I think otherwise, family caretaking can be an overwhelming task, since someone must be on duty, night and day. I think I would have undertaken it anyway, but I don't know how long my stamina or finances would last, since I wouldn't be able to work. I also want to add a note of caution about putting in the trach. Because my husband was rushed to the hosptital with a breathing crisis, we did not have the opportunity to chose the best hospital. The doctor who put in the trach did a terrible job. I was ignorant about what to keep an eye out for until it was too late, but let me tell you. The trach should not be too low as it causes much congestion. Make sure it is centered. This seems like an obvious fact but our surgeon put it in off to the side. It's hard to believe isn't it? If you plan ahead these things can be avoided. I think you should really discuss your concerns with your partner. My husband's breathing crisis came earlier than we expected and we had not had this discussion, I think this was a mistake.
Good luck to you and God bless. Susan Life on a Vent: A little vent humor Where have all the fluids gone, Long time gurgling? Where have all the fluids gone, Down in my lungs? Where have all the fluids gone? They've gone to suction everyone. When will they return? Yes they will soon return.
Wayne S. Phillips Feb. 9, 1999 |