Did anyones symptoms begin in the respiratory?

[Zina Perry]

Hello,
I have posted a few times but read and gain more knowledge from all of you each day. My question is if anyone other than my husband Mike begin with problems in the respiratory? He had his second opionon in Dec. of 2007 and when we visited the doctor he agreed that he also thought that it was not ALS. He did a muscle biopsy and after that he agreed that it appeared it was ALS. Now, Mike is totally bipap dependent and the last couple of days his oxygen levels have gone down to 84 for a brief period. I know this is not good. He also had neck surgery in March of 2007 and I thought that it could have paralayzed his diaphram. Supposedly, they had the surgeon look at the MRI and he said it was not. Just looking for answers. Have and good weekend and I will continue to pray for all of you and your families.

God Bless,
Zina Akin Perry
Rusk, Texas

[ZenArcher]

Zina my MRI showed spinal atrophy between C3 - C5 which if I remember correctly is where the control of the diaphragm lies. Since May 2007 my FVC has dropped 2 points every 3 months. Does it mean anything? I don't know. I have since started doing breathing exercises daily to see if I can improve it on my next visit.

As I'm sure you've read on here ALS is a diagnosis of exclusion. A muscle biopsy excludes muscle related issues. What did the EMG show? A quick search of the net will show the criteria for diagnosis of ALS. There are also cases of herniated disks mimicking ALS. I would post a link but until such time that links are allowed unmoderated I have decided not to. I apologize for that but send your concerns to David.

[Zina Perry]

Jeff,
When I carried Mike for the second opinion he had been tested for nearly 2 weeks in the hospital for every disease that they could test for. I understand that they rule our other diseases and then if nothing is found they give you the label of ALS. When we went for second opinion, the doctor said after doing the EMG and other test. He stuck needles in his chin, arms, ankles and stomach. He stated, now I know why you think he does not have ALS. We need to do a muscle biopsy. After the biopsy, he said Mike had lost 30 per cent. He started him on Rilutek and 1200mg of vitamin E. Since that time Mike has become dependent upon the bipap and has no appetite. I called the doctor and we would have to travel 180 miles to be tested again and at this time I do not feel he could make the trip. Thank you for your concern.

Zina

[hopingforthebest]

Dear Zina

Everyday "I" question could it be something other than ALS??? But, in my husbands case, after two separate leading university ALS Centers in different states, both clearly showed PMA classification of ALS. I was told his classification, PMA, was the "better" one, as progression was slower. Unfortunately, his is all upper body and diaphram involved and with this large muscle that controls breathing, he is in trouble.

I do not know his oxygen level, but FVC only 24% and hospice has been called in for eval in our home. They came yesterday. Lovely, kind and informative but we are on "information overload". My husband stopped working as of Thursday and I need to get paper work started for social security. He is 58 yr. old.

All these things that we all hoped would never happen to us at this age.

You are a loving wife to Mike and I pray today for the disease to slow down and not progress and if possible, a cure to be TOMORROW!!

Take care of yourself also.

Patty

[sisgldnhr]

Dear Zina


I do not know his oxygen level, but FVC only 24% and hospice has been called in for eval in our home. They came yesterday. Lovely, kind and informative but we are on "information overload". My husband stopped working as of Thursday and I need to get paper work started for social security. He is 58 yr. old.


Patty


My husband is 58 years old also. His FVC is at 25% and his oxygen level usually runs between 82 - 88. He is so weak that he sleeps most of the time. We recently went on vacation and out of 5 days he stayed in our hotel room 4 of those days. I talked him into letting me push him around Niagara for a day and he really enjoyed it. But there was no way that he could have done any walking.
Don's disease has attacked his lungs, upper body and swallowing. He is still having terrible problems with panic attacks when he puts his Bi-Pap on. I am hoping when we go back to clinic on June 24th, that they can help us resolve this Bi-Pap problem. What I found interesting though......while on vacation, he could sleep all day long with the Bi-Pap and did not have any panic attacks. Was it sheer exhaustion?? or was he relaxed enough to accept the Bi-Pap??

Sis

[jimercat]

Sis,

Has your husband tried the different "masks" for the Bi-Pap? My husband first tried the nose pillows, but he could not tolerate them. He then went to the mask that fits over nose and mouth and that seems to be better. I believe there is a third mask, but can't remember the description. It can take a while to get used to.

Wish you luck!

[MtPockets]

I tried 4 different masks before I found one that did not hurt my face overnight and that I felt comfortable wearing. The nose pillows are also another option that some have tried.
This is just one of the many sites that show the variety of masks and nose pillows that are out there. It is important that he find one he will wear and that he is comfortable with using.
http://www.cpapplus.com/CPAP_Masks/Nasal_Pillow_Masks_1.html

[Zina Perry]

If you sleep with your mouth open, the nasal pillow cannot be used. It took Mike a long time to get used to the bipap. He tried several masks and had problems with pressure sores on the bridge of his nose. He could not use nasal pillow at all at first, then after the sore on his nose got so bad and they delivered a new bipap(the old one slung a rod) we tried the nasal pillow again and there was not as much force with the new machine. He however does have to sleep with the ResMed full mask at night because he opens his mouth when he sleeps.

I talked with Mike today about a vent and tube feeding and I know we are not far away from both of these. He wants to live and see our grandchildren grow up and yes it may be possible, but with a different quality of life. He has a lot of questions about the vent and I will get someone to come out tomorrow and explain. His number one concern is CAN I TALK? . He also, sleeps alot and is very tired. He does not eat, but drinks Resource 2.0 and lots of tea. For those of you that can still travel, go and see the world and enjoy what God has created. We never know what tomorrow may bring. Thank all of you for your comments and God bless each of you.

Zina Akin Perry
Rusk, Texas

[sisgldnhr]

Thanks for the link to the different breathing masks. We will look this over today & see which one we should try next.

Sis

[DeeMichelle]

Zina Hi
I'm sorry for the problems your husband is having. My Dad's ALS began with respiratory problems also and he has a lot of atrophy in the chest, back and diaphragm muscles. Not Bipap dependent tho'. In the UK a lot of people use NIPPY particuarly helps some people at night. I'm sure you already know about this. It does sound like you've been messed around in the diagnosis I hate to hear of people being told "You don't have it" "Now we think you do have it." It's hard to diagnose sure, but then good neuros can diagnose and good neuros don't open their mouths until they are sure and get another opinion from another really good neuro!!! And when you look at it like that it's not so hard after all... Speaking with a bit of expreience here because it's familal with us and we have 4 maybe 5 family members who have had it so we know what makes a good neuro!
You're in my thoughts and I wish you all the best.
Dx

[Zina Perry]

Dee,
Thanks for your reply. This is the first case of respiratory onset that I have heard of besides Mike. He is beginning to keep me up at night and I get up this morning and read your post and you mention NIPPY. I am not familiar with that. Can you tell me more about it please? I am in the process of making arrangements to carry him for another EMG and will have to travel about 180 miles. This will be a long trip with someone who is bipap dependent and has to potty every 30 minutes. My question is? do we use the Men or Women rest room? New doors open every day and I will worry about that problem when I face it. Please stay in touch and I will pray for your family and also for a new medicine or cure for ALS.

Have a nice day!
Zina

[DeeMichelle]

Hi
Nippy is the name given to a range of ventilators that seem to work for people here. I think from what you say your husband has a ventilator that suits him. A range of
ventilators can be used, such as the BIPAP (Respironics), Nippy (Thomas Respiratory
Systems), DP90 (Taema and Bromptom Pac (Pneupac). I truely do not know which is better. I have read the following:

'In most individuals, ventilation is initially
needed only at night. If respirator muscle
weakness progresses, then use during the day
may be needed. Most people are able to
quickly acclimatise to nasal ventilation and
find their sleep quality improves.
One study (2) showed that people using Bipap
survived for significantly longer than people
who could not or chose not to use it, but that
there was a need to assess quality of life.
The need for non-invasive ventilation should
be determined by a recognised sleep studies
unit.
CPAP (continuous positive air pressure)
Continuous positive airway pressure” (CPAP)
is a mask and compressor system that
resembles nasal ventilation but delivers a
constant pressure rather than breathing
support. This treatment is helpful in
obstructive sleep apnoea as the pressure acts
to hold the upper airway open."

I am always reading this stuff to try to help my dad in the future and I use it to ask the neuros what we might need to do as time progresses. You are further down the line than me and probably know a lot more than me! It is rare to start with these symptoms. My dad always had some degree of chest problem even as a kid that was his vulnerable area and he feels the ALS has targetted him where he has a congenital weakness.

Do you have good support? You know how important it is to look after carers: please look after yourself- give yourself treats and breaks.
Thinking of you
Dx

[caroliney]

Yes, my husband's first symptom was a paralized diaphragm after a back fusion operation. Prior he had sleep apnea, but no breathing issues until this back surgery which left him with a paralized diaphragm. After a couple years, other symptoms started with weakness in arms, hands. Also, husband had leg movements uncontrollable jerking most of the night following this operation.
2 1/2 years ago, followed the slurred speech, which gradually was a wait and see with our neurologist and after a few more symptoms of weakness in the muscles, along with tongue fasculations, husband was dx with ALS. Never did husband loose his ability to move his arms, hands, legs, and to walk though.
The respiratory issue was hard for my husband to breathe since he only had one lung functioning due to the diaphragm paralysis. He changed from a c-pap machine to a bi-pap machine due to severe headaches (caused from lack of oxygen).
Hope this information helps you some way.
Sorry you are experiencing this dreadful disease and are here on this site for help. But many here know first hand what ALS is all about and can give you advice since they have been through this battle.

Hugs and Prayers,
Caroliney

[crystalkk]

Zina,
When you say he has to potty every 30 minutes are you just talking urinating?
If that the case can't you just carry a jar and let him go in that instead of worry about finding a bathroom and which one to use. They also have self catherers for men, I know some of the men on the forum use them.
You can find past post and links to websites where you can get them.

[MtPockets]

For those that may be interested, there is what is called a condom Cather that men can us in conjunction with a leg bag. This allows them the freedom to go anywhere and not have to stop at a public restroom, except to empty the bag occasionally. You can see some examples at:
http://www.hollister.com/us/products/product_series.asp?id=3&family=20&series=175

They also have the collection bags and other products that can handle all bodily functions.

If you ask them they will even send you a free sample so you can see what works best in your application. "The Extended Wear Urinary External Catheter", has adhesive on the end to hold it in place and comes in several sizes.

[Zina Perry]

Hello,
Mike was careflighted to the hospital Monday night. His oxygen levels were sinking fast and they told me he probably would not make it. As of today, he is on vent, has pneumonia and has his blood pressure controlled by medicine. He is responsive and nods his head and squeezes my hand. We have to play the guessing game to figure out what he wants. They brought a big speak and spell board but he has not used it yet. I had to fire the doctor today, because he discussed Mike's condition in front of him and said he did not think he should have a trach. I said he WANTED TO LIVE and we would get a trach and that I was inquiring about the nerve stimulator and he told me that no one around here does them and they do not work that well any way. I could not wait for him to leave so I could go the the administrator and get him off the case. He has no compassion for human life. My son said he wondered if the doctor would talk like that in front of his own father. Can you imagine being discussed about being removed from the respirator and not being able to voice your opinion. Some things need to be discussed in the hall. Sorry to be so crabby, but you are not dead until your heart stops beating and only God has the right to make that decision.

Zina

[hopingforcure]

Zina, Bless your heart, these people need to walk in our shoes just for a day. Sounds like we will all be raising kind caring children to soften this world. Keep us posted, my thoughts and a hug go with you..Hoping

[jimercat]

I continually read these stories from the great state of Texas! I'm from there so don't get me wrong. What are they growing there?

Zina, you fight every which way you can and I'm sure you will! How humiliating for your husband! I can't imagine the anguish and heart break that "doctor" caused.

Please know we are thinking of y'all!!!

[Al]

Zina, you kick and scream as loud as you have to, to get what you want.
AL.,

[happy]

Zina,
I work directly with Dr's in the emergency dept and it never ceases to amaze me how they can be so insensitive. Now granted, this is a very small minority. There are some really good ones too...keep searching till you find the one that takes up your cause..the're out there. Take your complaint to the Chief of DR's ask for him by name, that way you can be sure your complaint won't get lost in administration. Your family will be in my prayers.
Robin

[DeeMichelle]

Zina I'm really sorry to hear this. Your son sounds like such a good guy. Shout it loud!
You all deserve better.
Dx

[Zina Perry]

Robin,
It wasn't the ER doctor that said this in front of him. It was his pulmonologist that we have been using since October. He came in and adjusted the vent and said he is really having problems having his numbers lowered on the vent and I said you are aware that he was totally bipap dependant when he came in!!!! Hello, at least read the chart. The Er doctor was wonderful and ask at what lengths he needed to go to as far as saving Mikes life. I am getting ready to drive back to hospital now and might have to check my bank account to a careflight to Houston. If the new doctor is not more concerned I will do just that. Have they ever heard of HOPE. Gotta go and all of you and your families are in my prayers daily. Don't know when I will be back online.

God Bless,
Zina

[anneinma]

"He started him on Rilutek and 1200mg of vitamin E. Since that time Mike has become dependent upon the bipap and has no appetite. "

I am sorry to hear this. My husband's symptoms started with respiratory issues. They did find COPD but it got worse and he needed the bi-pap all night. Using it all night did help him during the day. Note, the loss of appetite was due to the Rilutek. We took him off that and he actually gained weight. The doctor said it was not worth losing his appetite as Riutek's benefit is questionable.

[MtPockets]

It just amazes me how so many Doctors with their god complex are so plain out right stupid. How can one human act that way to another is beyond me.
I'm sorry for your families pain in this situation. I pray you find a good compassionate Doctor. Peace be unto you.

[quadbliss]

I believe it is ethically wrong to recommend against track/vent. I feel the doctor, without bias, should present the pros and cons, and the decision should be entirely up to the patient and their loved ones. To do otherwise violates the Hippocratic Oath. No one but the patient themselves will judge their quality of life.

http://quadbliss.com/

Mike

[anneinma]

Zina,

I apologize that I did not read the entire thread before I posted. I am so sorry to hear of your husband's hospitalization. One of the most excruciating things we also went through was uncaring and carless physicians. I pray that things will work out for you and your family.

[CindyM]

My thoughts are with you and your family tonight, Zina. You all deserve better than this! Cindy

[Zina Perry]

Round 2 was today. After requesting new doctors and being told we would have a conference this morning and patient iformation would be exchanged between the two groups, who shows up but MR. WONDERFUL. He told me that he understood that I had request a new doctor and wanted to know what the problem was. I said if you will step outside in the hall I will be glad to tell you and about that time son number 2 had entered the room and said I will be glad to tell you what the problem is. Cody told him that his Dad did not have a tail and he treated him like an animal. Doctor said well you have to be truthful with your patients. What did you want me to say? Cody replied, Well I sure you are more educated than I am and I would think that during your training you would have been taught compassion and etiquette. He then told us he could not discharge the patient without another doctor being there and I told him we arranged all of that yesterday and he said that is not the way it works so I told him I would be sure and tell the administrators that he said they did not know how to do their job. Long story short, we told the head of the hospital if he enters the room again we will OWN than hospital. I am still not convinced that he has ALS because he only has respiratory failure. New doctor will be by late tonight and I pray that he will have compassion and I know that Mike is in serious condition and will have to have a trach to live, but we will continue to fight no matter what tomorrow may bring. Sorry to have rattled on and on!

Zina

[crystalkk]

Zina,

You can ratttle on and on all you want, we understand what you are going through.
Good for you with sticking to your rights.....I can't believe how uncompassionate some doctors can be.
I will keep you and your family in my prayers.

[jimercat]

GO Cody! That doctor is a complete jerk Zina!!! I'm so proud that your son stood up to the a@#. (that word's in the Bible you know!:mrgreen:)

I sincerely hope your new doc has more sense.

Please let us know what happens with this situation.

Wish you, your husband and your family good luck!!!

[Zina Perry]

Well the new doctor was very nice and told me more in 10 minutes than the other doctor has said since October. Although, he told me the only way he would consider letting Mike out of the hospital is if he went to a nursing home. He is retaining fluid which means his heart is not doing all of its job and they are having to control his blood pressure with medicine. If they back off of the medicine the least bit his blood pressure drops low. The doctor has set up a conference with me and my sons and the neurologist for this afternoon at 5. I know what they are going to tell me and as long as MIKE PERRY is alert and knows what is going on he will not be sent to a nursing home of taken off the respirator. After we have the conference I will discuss his condition with him and what he wants will be the decision. God bless each of you for your support and I pray for you daily. I might not be home for a few days but will check back as soon as I can. All of you are wonderful people and are very supportive.

God Bless,
Zina

[hopingforthebest]

Dear Zina

Praying for you and the boys and of course Mike. Asking God for wisdom for you all!

Take care of yourself also!

Patty

[CindyM]

I am thinking of you and your family today, Zina. THere are no right workds in a situation like this. Hugs, Cindy

[Zina Perry]

Well I came home tonight to get some rest. I fired doctor number 2 yesterday. He was a member of the same group as the other (((&^&%. All they want to talk about is being removed from the vent, nursing home and then hospice. I told him he was just trying to get rid of me and that Mike would go home and if he would not do that when the time came that he could leave. He said he felt we had no patient/doctor trust. After 11 days of battling with these idiots, I demanded to see the chief of doctors. They called him and put him on speaker phone and I ask him if he could come to the hospital because I prefer to look in the eyes of someone when I speak to them. He came and I told him that doctor 2 had told Mike that his only choice was to be removed from the vent, nursing home or hospice. How long does he think hospice will allow Mike to be on a vent? He also told him that he would have to sign a DNR and that he could not come back to the hospital with pneumonia, bed sores or any other problems. He is not God and does not own the hospital. I told him to get out and not to come back. Doctor 3 showed up today and she was very kind, informative and was concerned about Mike NOW. Although, because she is a member of the same group, she has to stand by the choices. The head doctor told me that Mike could leave when pneumonia is clear and blood pressure is controlled. He also said that I should not have to fight for what the patient wants. He also told me that the new group did not want to assume responsbility and they were looking at group 3. I know its because of Mikes loving wife but I will not settle for less than what Mike wants. He said that they could not keep him and they would discharge him when he was ready. I asked him to put it in writing!!!!!
I know that someone must have left that hospital with a vent before. I also asked if they thought that I could not take care of him. The neurologist wants to try an IVTP treatment on Mike. He is kind, compassionate and is trying to help Mike get better instead of killing him. He also told me that Head doctor would step on some doctors toes for what they said to us. You know that man loved being called back to the hospital on a Friday evening. I told him if we had not researched and learned that hospice would discontinue the vent we would have had problems. I ask him how many people had died because of these people not knowing they had other choices. Please pray for Mike and now I do understand mental anguish.


Zina

[MtPockets]

Zina please go read my comments about my experience with Hospice at: http://www.alsforums.com/forum/showthread.php?t=5383
Maybe this will help you. They basically told me they would help me die comfortably, but normally only covered someone for 6 months. I guess according to them if you live any longer than that, tough luck.

I'm sorry you are having such a tough time with this.

[jimercat]

Zina,

I pray that I have your strength when times get tough!

I hope your husband recovers from the pneumonia and his blood pressure stabilizes soon. Please keep us informed and let your family know we are pulling for your husband!

I know your husband must be so very thankful to be married to a woman such as you.

[CindyM]

Your husband and family are lucky to have you in their corner, Zina. You are doing what we all wish our loved ones would do for us if needed!

[rose]

Zina, I just cry for you every time I read your posts. I'm so sorry that you're in the position you find yourself in! Your husband is blessed to be loved by someone like you. Do try to get some rest! you know how many germs are floating around a hospital just waiting to get to someone that is run down. I hope your husband recovers from the pneumonia and the blood pressure is able to be better controlled! (((lots of hugs!!)))

[fiddleplayer51]

Zina,
You shouldn't have to fight so hard. It's ridiculous! I truly admire your persistence and ability to state your case with unrelenting strength and determination. Stay strong! Many people are thinking of you and your family in this horrible situation.
Jane

[Zina Perry]

Mike's xray showed that the pneumonia was better and they have begun the autoimmune treatment. They come in once a day and turn the respirator the the settings that were on his bipap and he was able to breathe 15 minutes. That's not long but considering the fluid and pneumonia I am pleased. He is ready to sit up in the bed and they will not allow him to do that but maybe after the trach is in. ALL of the doctors are being so nice and doing their job. The nurses are wonderful and when his favorite nurse came on duty I decided to come home and sleep in my bed tonight. I want to thank each of you for your concern, comments and prayers. He is a fighter. He won the battle with carcinoid cancer and he will continue to fight. The neurologist told me that really did not know what caused the diaphram to be paralyzed. He said it looked like ALS, but he had never seen the onset in the respiratory before, but tests do not confirm, but there is nothing else to look for. He said if it looked like a horse and walked like a horse but it might be a zebra. He will continue to support me and care for Mike until the end. God bless each of you and your families and have a great week.

Zina

[fiddleplayer51]

Zina,
This is great news. I know you must be exhausted and maybe now that you don't have to worry quite as much you can get some much-deserved rest. You're a true inspiration as you go all out for your loved one. Mike is very lucky. Thanks for posting all the trouble you've had and the various run-ins with doctors. Freely posting such information can be a real encouragement & give strength to others in their struggles trying to navigate the medical world. Your persistence paid off. I wish your family well as you continue on this journey.
Jane

[hopingforthebest]

Dear Zina

Have been praying for Mike unceasingly! God is good!! May he keep up the good work!!

God bless him and you during this fight for his life!!

Patty

[Zina Perry]

Home again for the night. Mike got his peg line put in yesterday and his trach today. The new doctor has ordered physical therapy and is trying to wean him from the respirator back to the bipap. His diaphram is producing 18 to 24 per cent of the breath and the setting is on 34. They have him on every other breath and today he made it for about 3 hours. Many prayers have been answered and I pray that he will be able to go back to the bipap, but it will be long road to travel. He is a fighter and I know he will do the best he can. He can inhale 33 per cent and exhale 18 per cent. That is not much, but only time will tell. He still has a lot of fluid and today is his final day of the 5 day auto immune treatment. The new doctor was shocked to learn that he could use his arms and legs. He must have been told by the doctor from***& otherwise. He said it is unusal for ALS to be in the diaphram and no where else. I still think this was caused from his neck surgery in 2006. Of course, they will not pursue that theory because he had his surgery at the same hospital. Need to close and get some rest. God bless each of you and you are in my prayers.

Zina

[jimercat]

Zina,

As Jane said, thank you for sharing all of this with us, as it could help us down the road!

Hope you get well deserved rest you need.

Please keep us informed.

[checkmat2]

Yes my husband symptoms began with his breathing and his muscle started to go away as well....he is 45 years old and self employed...he gets extermely tried when he walks a few steps.

Christina

[CindyM]

I am so glad to hear Mike is doing better now, Zina. You two deserve the best! Cordially, Cindy

[Zina Perry]

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

[crystalkk]

Zina,
Mike is very lucky to have a wife like you that fought for him, you and Mike are in my prayers.
please take care of yourself ......

[Carolan]

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/science?_ob=ArticleURL&_udi=B7J28-4KSSWNF-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=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]

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

[CindyM]

It sounds like a big responsibility Zina but I bet once you pass the learning curve you and Mike will take right to it! Good luck and keep us up to date, ok?

[quadbliss]

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

[fiddleplayer51]

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

[jimercat]

Good luck to you Zina! Keep us posted on your journey.

Sounds like you are a real trooper! and I'm sure your husband is ever so grateful to have you. What a difference you have made for him!