Did anyones symptoms begin in the respiratory?
- Thread starter Zina Perry
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Zina Perry
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- 12/2007
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Mike is still retaining a lot of fluid, but is asking to sit up and shave. I shaved him and he brushed his teeth. He wrote that he felt a lot better and the doctor said he could start drinking some fluids. I did not know that you can drink with a trach! The nurse said she would prefer we try ice chips today and he wants V8 Fusion strawberry banana juice. I want to thank all of you for your prayers and concerns. He still has a long way to go before he comes home, but at least I feel comfortable coming home at night now. We live about 48 miles from the hospital so my gasoline budget is going to be quite large this month. Again, all of you are in my prayers.
God Bless
Zina
God Bless
Zina
Zina, I am so sorry about what you are going through. I wish I had been following this forum more closely for the past few weeks. My mom has a trach and uses a ventilator 24 hours a day, and we live at home together. There are some steps that you will need to take in order to get your husband discharged from the hospital with a ventilator. If your insurance allows (or is he on Medicare yet?), try to get transferred to a Long-term Assisted Care facility (LTAC). These hospitals specialize in critical care for extended periods of time, and therapy is part of the treatment plan. My mom was in an LTAC for about a month, and she saw occupational, physical, and speech therapists every weekday. Mom is not only able to drink but also to eat small amounts of food in spite of her trach. Our speech therapist taught me how to do this. She does not normally speak out loud, but it is possible when necessary. There is also a device called a Passy-Muir Valve (PMV) that can help with speech, but my mom doesn't like it.
Our first choice LTAC rejected my mom, and they gave us a convoluted story (different from what they told the hospital caseworker who was trying to get my mom transferred to the LTAC) about the reason. I finally figured out that the *real* reason they blocked my mom was that they didn't want to mess up their 100% success rate statistics for vent weaning. Don't be too talkative when you deal with admissions staff at an LTAC because they are very concerned about their statistics. Nevermind that my mom wasn't even a candidate for vent weaning. But the second one turned out to be perfect for us. If you go the LTAC route, try to find one that has a strong respiratory therapy program.
Now, the LTAC will not discharge your husband until they are assured that a solid outpatient plan is in place. The reason for this is because of hospital liability--they simply cannot discharge a vent-dependent patient without certain provisions in place. We had to get a home inspection done to ensure that our electric wiring is properly functioning, and they also did an evaluation of my mom's living space for safety issues. Also, they wouldn't let me take my mom home without assistance--we have to maintain part-time private duty nursing assistance. We have a nurse at night while I sleep, plus sometimes during the day so that I can get out of the house sometimes. At the LTAC, you will be trained on every aspect of ventilator/trach care, including suctioning, how to operate the machine, and how to clean the trach. It is a little overwhelming at first, but after a month, everything becomes "old hat." Again, they will not discharge your husband until you have been trained, and you must also prove that your nurses have been trained. Do not--under any circumstances--allow a Certified Nurse Assistant to do ventilator/trach/medication care. We ran into this problem with our first home health care agency when they lied to us about the skill level of their in-home sitters. My mom almost died as a result, but I was able to resuscitate her while the CNA watched in bewilderment. Of course, your situation is different because your husband is mobile, whereas my mom cannot move her legs or arms anymore. The requirements for discharge from an LTAC might be different in your case.
I am leery of nursing homes for ventilator patients. There are only 7 in the entire state of Texas that accept vent patients, and they have a limited number of spaces. Home is so much better because we have my mom's personal belongings all around her, and she can get assistance whenever she needs it, rather than waiting for someone to come around to check on her. Sometimes it's the best option, but I think of it as a "last resort."
More about your husband's diagnosis: Have you been to an ALS clinic? Dr. Stanley Appel is right there in Houston, and maybe you could get your neurologist to pull some strings and get your husband in there quickly. Dr. Appel is an expert in the field of Motor Neuron Disease, and he might have answers where others don't. Also, check out this link:
http://www.sciencedirect.com/scienc...serid=10&md5=e30dd498928d7ba1d431ad5d7d5b18c8
See if you can access the article somewhere. If you are at a hospital in Houston, maybe you can swing by a college library in the area to view the article on a computer there. Most university libraries have online subscriptions to journals, including medical journals.
Good luck, and keep us posted on how things are going.
Our first choice LTAC rejected my mom, and they gave us a convoluted story (different from what they told the hospital caseworker who was trying to get my mom transferred to the LTAC) about the reason. I finally figured out that the *real* reason they blocked my mom was that they didn't want to mess up their 100% success rate statistics for vent weaning. Don't be too talkative when you deal with admissions staff at an LTAC because they are very concerned about their statistics. Nevermind that my mom wasn't even a candidate for vent weaning. But the second one turned out to be perfect for us. If you go the LTAC route, try to find one that has a strong respiratory therapy program.
Now, the LTAC will not discharge your husband until they are assured that a solid outpatient plan is in place. The reason for this is because of hospital liability--they simply cannot discharge a vent-dependent patient without certain provisions in place. We had to get a home inspection done to ensure that our electric wiring is properly functioning, and they also did an evaluation of my mom's living space for safety issues. Also, they wouldn't let me take my mom home without assistance--we have to maintain part-time private duty nursing assistance. We have a nurse at night while I sleep, plus sometimes during the day so that I can get out of the house sometimes. At the LTAC, you will be trained on every aspect of ventilator/trach care, including suctioning, how to operate the machine, and how to clean the trach. It is a little overwhelming at first, but after a month, everything becomes "old hat." Again, they will not discharge your husband until you have been trained, and you must also prove that your nurses have been trained. Do not--under any circumstances--allow a Certified Nurse Assistant to do ventilator/trach/medication care. We ran into this problem with our first home health care agency when they lied to us about the skill level of their in-home sitters. My mom almost died as a result, but I was able to resuscitate her while the CNA watched in bewilderment. Of course, your situation is different because your husband is mobile, whereas my mom cannot move her legs or arms anymore. The requirements for discharge from an LTAC might be different in your case.
I am leery of nursing homes for ventilator patients. There are only 7 in the entire state of Texas that accept vent patients, and they have a limited number of spaces. Home is so much better because we have my mom's personal belongings all around her, and she can get assistance whenever she needs it, rather than waiting for someone to come around to check on her. Sometimes it's the best option, but I think of it as a "last resort."
More about your husband's diagnosis: Have you been to an ALS clinic? Dr. Stanley Appel is right there in Houston, and maybe you could get your neurologist to pull some strings and get your husband in there quickly. Dr. Appel is an expert in the field of Motor Neuron Disease, and he might have answers where others don't. Also, check out this link:
http://www.sciencedirect.com/scienc...serid=10&md5=e30dd498928d7ba1d431ad5d7d5b18c8
See if you can access the article somewhere. If you are at a hospital in Houston, maybe you can swing by a college library in the area to view the article on a computer there. Most university libraries have online subscriptions to journals, including medical journals.
Good luck, and keep us posted on how things are going.
Zina Perry
Member
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- Jan 5, 2008
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- 29
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- Loved one DX
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- 12/2007
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- Texas
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- Rusk
Hello,
Mike is still in the hospital and has about 50 pounds of fluid to lose. The lasix does not seem to be working anymore. They have tried to deflate the cuff on his trach so he can talk, but he has panic attacks. I don't know if they will try anymore or not. Since I am bringing him home the doctor has me taking total care of him although he is ICU. I am going to be taught how to remove the trach and replace it today. I know I can do it, but its a bit scary because I know that Mike is depending on me to take care of him and I dont want to disappoint him. The ventilator at the hospital has an inline suction, but the doctor told me a portable vent does not. I used the caether suction today. I would think that an inline would be cheaper to use. The company that will provide respiratory at home are supposed to bring their vent to the hospital at least 5 days before dismissal and train me to operate it. I know there are probably lots of unknown questions that I will have, but so far I am doing a good job as a nurse, respiratory therapist and physical threapist. I go in at 7 and stay until 6 and the nurse really likes to see me! If anyone has any suggestions or questions I shoud be asking please let me know. Thanks to all of you for your support.
Zina
Mike is still in the hospital and has about 50 pounds of fluid to lose. The lasix does not seem to be working anymore. They have tried to deflate the cuff on his trach so he can talk, but he has panic attacks. I don't know if they will try anymore or not. Since I am bringing him home the doctor has me taking total care of him although he is ICU. I am going to be taught how to remove the trach and replace it today. I know I can do it, but its a bit scary because I know that Mike is depending on me to take care of him and I dont want to disappoint him. The ventilator at the hospital has an inline suction, but the doctor told me a portable vent does not. I used the caether suction today. I would think that an inline would be cheaper to use. The company that will provide respiratory at home are supposed to bring their vent to the hospital at least 5 days before dismissal and train me to operate it. I know there are probably lots of unknown questions that I will have, but so far I am doing a good job as a nurse, respiratory therapist and physical threapist. I go in at 7 and stay until 6 and the nurse really likes to see me! If anyone has any suggestions or questions I shoud be asking please let me know. Thanks to all of you for your support.
Zina
quadbliss
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Hi Zina,
It sounds like your doc is on top of things. I have heard stories of folks who feel confident with the training they receive at the hospital, only to return home and discover that their medical supplier provides completely different equipment.
Mike
It sounds like your doc is on top of things. I have heard stories of folks who feel confident with the training they receive at the hospital, only to return home and discover that their medical supplier provides completely different equipment.
Mike
fiddleplayer51
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Zina,
It sounds as if you've got what it takes to be a top-rate CALS for your PALS with the vent. Mike (quadbliss) has a real good point. Make sure that the company who is bringing to the hospital the vent that you will be using at home brings all the parts and accessories that you will actually be using at home.
I know you will do a great job. You've certainly passed all the other tests you've been given!
I hope your husband can get rid of some of that fluid. Best wishes to you both and good luck to you as you learn new skills.
Jane
It sounds as if you've got what it takes to be a top-rate CALS for your PALS with the vent. Mike (quadbliss) has a real good point. Make sure that the company who is bringing to the hospital the vent that you will be using at home brings all the parts and accessories that you will actually be using at home.
I know you will do a great job. You've certainly passed all the other tests you've been given!
I hope your husband can get rid of some of that fluid. Best wishes to you both and good luck to you as you learn new skills.
Jane
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