Coming home on a ventilator

[Zina Perry]

Hello,
My husband, Mike is currently in ICU and has been since May 19th. He had to be placed on a ventilator and the doctor wanted to cut it off or send him to a nursing home. I said no and have finally got the hospital to agree to bringing him home on a vent. Now, they tell me that I need to have at least 6 people trained on how to care for him at home and take vent training. I have 2 sons and a daughter in law that is a RN. I don't think I would leave him with just anyone. As of now he has a lot of fluid, but once its gone I am convinced he will walk again. The only symptom he has is a paralyzed diaphram. I know it will be a tough job, but I know I can do it. How many of you have people help in shifts. I know that if I have appointments or need to shop my daughter in law will stay with him. I can nap when he does and I think I can do it. I have been giving him total care at the hospital for 10 days now and together we have managed to do everything. Please give me suggestions on being at home on a vent and any issues that I might consider.

God Bless,
Zina

[CindyM]

Well, what do they think will be gained from putting him in a nursing home? Do they think they can prolong his life? Maybe they are just afraid of a lawsuit.

But you should be able to take care of him, from all I have read here and elsewhere. True, you may need help so I am glad you have people willing to be trained. But a lot of people believe that carefully trained family members can do a better job than harried and under-paid staff.

Of course I say this with NO experience and NO training. So take it for what it is worth. I'm just now being DX'd with a paralyzed diaphragm and do not even have my bi pap yet, so all I have to offer is a lot of recent research. :-D

[Al]

Hi Zina. Sorry about your husband's progression. Have you read Mike aka Quadbliss's website? I think he offers vent tips there.
AL.

[fiddleplayer51]

Zina,
You're a real trooper and I know you'll succeed! Thank goodness for family! You're one of the lucky ones and I'm glad for you.
I hope you get some good suggestions and tips here about what to look for.
All the best,
Jane

[quadbliss]

Hi Zina,

Taking care of a vent patience at home is actually easier then at the hospital. You can spread out a little, and organize things the way you want them. After some time, everything will begin to become routine.

One thing to consider though. If Mike doesn't sleep well though the night, Eventually, you may become fatigued. Make sure you get some good sleep meds prescribed for him before you leave the hospital.

The hospital's criteria for release can seem arbitrary, but I would play along. Try to find a couple more people to train. It doesn't mean you have to use them. :-D

Mike

[freddiesnetty]

I have been up all night freaking out about this post, you see Freddie is going to go into surgery next monday for a trach, I read these posts and there is no way I have this huge team to help me....But I was worried that they would keep him and not let me take him home, well when I woke up(actually waited for hours) I started calling everyone about the equipment and the hospital. They still hadn't called me to tell me whether to come in Sunday evening or Monday morning...I am thinking that they are not very organized. When I first scheduled this they scheduled it as a peg....I am thinking holy crap isn't the trach a little more important???? Well cbs news called his doctor and before the media got all involved about 2 years ago the doc says to me" well this is alot of work and I don't think you can afford this or all the time" once he discovered that my hubby was "somebodY' but aren't we ALL!!!!!!!! He immediately scheduled the trach...whew......that was figured out, but then I started thinking if I don't seem to have an army, they are not going to let him come home....Well I got on the horn and started calling people and low and behold our best friend is going through a divorce and offered to move in, another phone call and low and behold they can rotate their schedule.....So I am thinking as long as I have all these people show up at the hospital and train...........I should be ok......I will have 2 adults living with me.....I have often thought of us and my friends as "the rebel rock and rollers" We are stereotyped just cause we are musicians..........But how funny now all those weird hours we have kept for years are finally paying off, cause they are all just like us and you never know I could be b-b-quing at 2 or 3 in the morning (it took me awhile to adjust).......How funny that sometimes when It seems like it all is together and then at the last moment you really do have to double check with these docs.... So here is to all my musician friends"Thanks for staying up at nights" Quadbliss you are truly an inspiration to my husband....He says he wants to write some music for you picture slideshows!!!! lol.......Thanks for all that yall do to get me through the days.....I couldn't do it sometimes
Lots of Hugs to all
Netty

Capt Al Freddie says happy birthday to you and he IS going to have a glass of wine for you and a toast!!

[jimercat]

Go Annette!!!

Don't let the medical professionals intimidate the musical professionals!

Although we may value their judgment, they are not GOD!

Like Mike says, play along. I have confidence that you can accomplish what you desire!!!

Please let us know how it goes!

We all are in this together and need each other!!!

[freddiesnetty]

i just love your replies!!! They make me smile and I haven't smiled tooooo much today!!

See you could be in the music biz, you have a sharp and witty way about you!!

Thanks for making me smile!!
netty

[Al]

It was me that had the birthday Netty unless Capt. Al has one too by coincidence.
AL.

[freddiesnetty]

Well happy Birthday!!!! My brain has not been functioning to well today........I knew it was you though!!
so cheers!!
Freddie and Netty

[CindyM]

Keep us informed, Netty. And you too, Zina. We are all interested in how this works out for you guys.

[joelc]

My family has just gone through two days of training on tracheostomy and vent care. I am scheduled for July 9th. I have been working on this for about a year getting all the medical community used to the fact I am going to to this and am coming home right after. It took a long time, but they are now totally on-board and supportive. It is NOT that impossible to have happen, it just takes time to adjust and get a routine going.
We are fortunate as three of our children, and their spouses, live close and came for the training .
We actually moved here last September in anticipation of this.
So 1 month from now I will be sitting behind my computer again with a trache/vent.

If I can do it, anyone can !!

[Zina Perry]

Thanks to everyone for your replies and notes of encouragement. Mike now has a staph infection in his old peg site which was removed in March. He also has a rash which they said was a yeast infection. I told them for 2 days about the site being red and they never have said that it was infected, but they started him on an antibotic and are saying it is all from yeast. He is getting flagyal? for the yeast infection. He seems to feel worse today but all days cannot be good. I passed the home inspection and I think they are planning on bringing the portable vent to the hospital on Monday and if all goes well he will be discharged the following Monday. He still has some fluid but has been sitting on the side of the bed with assistance. Again, I appreciate all of you for being here for me and I have made a list of caretakers to be trained and I also have to give the hospital a schedule of our life when we return home. Please keep me and Mike in your prayers and I know together we can do this. We have been married for 38 years and I don't plan on giving up on him.

God Bless,
Zina

[fiddleplayer51]

Zina,
I hope all goes well for you and that Mike gets discharged as planned (July 7th?). It's been a long road since May 19th, but you've shown that you have what it takes to succeed. I'm sure Mike must feel some encouragement just being able to sit on the side of the bed with assistance.
Getting him home will be such a relief. Just being in his own surroundings should make him feel better, and not having to go to the hospital takes a real load off you. Good luck with it all. You're a real inspiration.

Joel,
I just reponded to you under the bipap question thread...Wow! All I can say is I wish you the best. It's great your children can help so much and are nearby. It's wonderful that you could move to be near them in September. With this disease you always have to try and be one step ahead so you can be ready.
It's amazing that it took a year to get the medical community in line. Good work!
Good luck in July and always,
Jane

[jimercat]

Hope y'all keep us posted on how everything goes for each of you'ins!

Good luck!!!

[Zina Perry]

Hello All,
We had a busy week. Mike was sitting up on the side of the bed and using his arms and legs alot a week ago today. On Saturday night he starting burping his peg feedings up into his mouth and then his bowels starting moving about 11 times a day. They stopped the feedings and did a Catscan and said his bowels were paralyzed and this was normal for people who have been in ICU for a long time. They tried the feeding again on Sunday afternoon and within 2 hours he was vomiting. They did another Catscan early Monday morning and said his liver was infected. They saw two absesses and they were not there on the previous catscan. Tuesday morning they drained over a litter of fluid from his abdomen and Wednesday they aspirated the two spots on the liver. He only has 40 per cent of his liver because of carcinoid cancer in 2004. Thursday they started dialysis and have continued to do so to help rid his body of all the fluid. His urine output was less than 5 cc an hour. I don't know how much more he can tolerate, but is resting well today. After they complete the dialysis we pray that the kidneys, stomach and bowels will begin to work again. If not I will have to make a long dreaded decision to remove him from life support. I pray for all of each morning and night and ask that you do the same for Mike. He is such a fighter and I know he will do his best to survive. Have a great weekend.

Zina

[fiddleplayer51]

Zina,
What news! You and Mike have been through so much. I know Mike is a fighter and will do as much as he can. And I know how strong you are. You're such a good team.
I'll be keeping you both close in my heart and thoughts and hope with all my heart that you do not have to make the dreaded decision.
Have a restful night, Zina, and may Mike rest well too. Tomorrow is a new day with new hope. Keep strong and know we're all here for you.
Peace to you and Mike,
Jane

[sharonca]

Wow Zina - what a time your family has had. I so much appreciate your taking the time to post and keep us all informed. My prayers will go out for healing and rest.

Sharonca

[freddiesnetty]

Zina,
We are praying for you and your family..........I hope all is well, I too have been in the hospital Freddies trach went well, Monday feeding tube...We are hoping for the best for yall.
netty

[jimercat]

Zina,

Hope things have improved for you and your husband! Thinking of you...hoping the best.

[leegardens]

Z,
You and your PALS are in my prayers.
Lee

[Carolan]

Zina, I am so sorry that this situation has become more complicated. You will make the right decision when the time has come, but I also know that you will be as informed as possible beforehand. I hope that things get better and that Mike is able to come home, but if not, I pray that you will have the strength to get through this.

Netty, hang in there as well. Sometimes it's a matter of finding one doctor to support your decisions, and with ten gazillion specialist doctors running around eager to put in their two cents (for $300 a minute, it seems), it can be a battle. "Musician hours" definitely pay off when you become a caregiver, though.

For anyone reading this who might be investigating the practicality of bringing home someone on a trach, you really do need more than one person to help out. Take advantage of the training that the hospital offers--it's your chance to learn from respiratory therapists and nurses who have dealt with many more patients than just your loved one. They will offer you valuable tips, but of course, you will be "in training" for months beyond the hospital discharge. It's too much for one person to do alone. No matter how good your intentions, you will make yourself sick if you don't get help from relatives, friends, or paid help. A few weeks ago, I got salmonella poisoning from tomatoes or whatever the FDA now thinks is the culprit of the outbreak, and I was up all night dealing with that. I had to sleep most of the next day to recover from the rough night, and I wasn't back to normal until a couple of days later. Also, you need time for yourself, as you will hear from everyone in the world (you will probably want to scream "I am [bleep bleep] taking care of myself, so [bleep bleep] leave me alone" after the first thousand times that people ask you how *you* are doing). I go to the movies or something else out of the house every once in a while just so that I can have an answer to the "Are you getting time for yourself?" question.

I have you all in my thoughts and prayers, even though I don't get on here very much these days. Taking care of a vent-dependent mother is certainly time consuming, but I wouldn't trade this time for anything. Well...I'd trade it for a healthy mother...but you know what I mean...

[fiddleplayer51]

Good advice, Carolan, both about having sufficient outside help as well as taking occasional time away.
That's terrible about your Salmonella. You must have felt so sick. Hopefully, they'll soon determine the culprit.
I take it from your post that you have that extra trained help that could come in while you recovered. Lining up help that can be called in on the spur of the moment before actually needing it is essential throughout the course of this disease. We never know when we CALS will be called away for a family emergency elsewhere or when we ourselves may get ill as you did and have to stay in bed for a day.
I wish you well, Carolan. Your mother is so lucky to have you.
Jane

[Al]

Zina and Netty. Hope both your spouses are doing better today.
AL.

[fiddleplayer51]

Joel,
I remembered this evening as I was washing the floor that you mentioned that July 9th (tomorrow!) is when you're scheduled for tracheostomy and vent.
I just wanted to say that I wish you well. It's great you have your family trained in tracheostomy and vent care and they're ready to help you. I'll be thinking about you tomorrow and look forward to getting news of how your are post-procedure. May you soon be home again and posting here.
Peace to you, Joel.
Jane

[freddiesnetty]

Yes GOOD LUCK on the procedure, I know that it will turn out well. Will say an extra special prayer tonite for you....God Bless You and Your family..
Netty

[joelc]

Hi Everyone. I thought it was time to post a note to everyone to let you know what is, and has been happening, in our neck of the woods lately.

Some of you already know some of what I am going to share, but for those that don't I will start at the beginning. I was having increased problems breathing, it became very clear in the late Spring that I was going to have to do something more than a BiPap or my time this side of heaven would be very short. So we decided that getting a tracheostomy and vent was going to have to be done before the summer was over. We put everything in motion for this to happen before I ended up in the emergency room. We contacted doctors and the medical people we would need after the surgery and were approved for the surgery. We had a two day training session in our home and all our kids and spouses took two days off work to attend. We were all trained on how to take care of the tracheostomy and also ventilator trouble shooting and maintenance. This was no sooner done when we got the call there was a bed available at VGH.

To give you a brief schedule of what happened..........

I had the surgery July 9th starting at 3:15pm , I was awake and conscious at 3:45pm and in my room by 4:40pm. I was suctioned for the first time at 9:00pm.

By 10:00am the next morning they turned my cuff down and I could talk. I was not suctioned at all this day.

I was suctioned a few times on the 11th but experienced no pain or discomfort. I was very surprised at this. The RT (respiratory technician) was trying to get my tube replaced with a cuffless one so I could go home by the weekend, but I didn’t make it, and since nothing happens on the weekend, we looked to Monday the 14th to have it done. So I had a quiet weekend sitting around waiting. I was suctioned very few times during the weekend.

On the 14th a Dr. came to say Hi and ended up changing my tube – it took about 10 seconds and I felt nothing which surprised me. Now we waited for the discharge team to see us so I could go home. But they didn’t come, a Social worker came and was horrified that I was thinking of going home already, so she put a stop to it temporarily. The one thing they could not understand is that we were prepared for this and everyone was trained to take care of me at home. I had to explain to everyone, multiple times, that we were prepared and set up at home. Finally the message started getting through.

They never have anyone prepared like we are – we elected to have this happen and didn’t come in as an emergency. We soon had just about every Dr. and Admin. person come in to verify and talk to me because they were in disbelief. That took 2 more days before they would release me. I would have been home the 13th but there wasn’t an ambulance and RT available at the same time to take me home, so we waited till Thursday morning and was released and driven home in luxury!

I am not sorry I spent 2 or 3 extra days in the hospital because a few weird things happened that taught me a lot and I’m grateful to have had that experience at the hospital as apposed to being home. I learned how CO2 plays into this. I talked too much to many different curious Drs. and nurses explaining to them why we were set up at home so quickly. This winded me a bit and I was having trouble catching my breath. It wasn’t until some 12 hours later, in the middle of the night my CO2 alarms went off and the RT stepped up my volume and 2 minutes later I was OK. If your body is high on CO2 it instinctively asks for more air and you breathe faster, but the Vent wasn’t supplying enough. It was uncomfortable for that time as I felt I was gasping for air and wondering whether I was having an anxiety attack. I couldn’t stop trying to get an extra breath. It was good to find out it wasn’t anxiety, it was a high CO2 level.

I realize I’m one of those rare people that don’t need to be suctioned much. Maybe once or twice a day I have to be suctioned. This is an advantage to scheduling a tracheostomy before it becomes an emergency. Things are just so much easier this way. Everyone was surprised at how quickly I healed and adjusted to the tracheostomy and vent.

Everyone told me I looked ten years younger. I no longer have to wear myself out just trying to breathe. The difference between a vent and a bipap is absolutely night and day. I couldn’t imagine trying to use a bipap 24/7. The vent is just so much more relaxing and I can still talk and eat just like before the surgery. This was significantly easier than I was prepared for.

Since being home we have had our ups and downs, I started suffering from hay fever and ended up with a bad cold. Thankfully that is behind us now and things are much better.

Love you all, Joel

[nspoc]

Hi Zina, Joel, Annette - and everyone -

My friend Pat came home on a vent July 1 - hopsitalized with pneumonia for 60 days. We were going to vent all along - but pneumnia kicked us into high gear. LOTS of hospital induced problems - but we are home now.

Our course has been nowhere near as smooth as Joel's - lots of vent foul-ups thanks to idiots at our DME supplier. We did plan everything out - but still had problems.

My advice: have at least a little help at home. The work does settle into a routine - and it is not at all overwhelming or backbreaking. But Pat cannot talk now (due to lack of care coordination, but we are moving in the right direction) so I have to be very nearby to be able to meet her needs.

She can move her head very well and her arms and hands a little, but nothing else - therefore there is a lot of physical work - turning, etc. Also - she came home on tube feedings, even though she had been eating fine before the trach - so we were dealing with diarrhea up to 12 times per day. Now leveled off to 3. Lots of diaper changing.

I have 50 hours of help a week - and feel I could use more - especially on weekends. Nights are not terrible - no worse than when she was on 24/7 bipap - days are busy. Our biggest challenge is transferring her from bed to wheelchair - and switching vents. We have an overhead lift (a godsend!!) and we take it slow and easy - takes about 15 minutes to fully switch over. Then we have to haul the ambu bag and portable suction around with us.

Another challenge is dressing her. It is physically tiring to wrestle her into clothes - and then into her wheelchair - you need plenty of time. An appointment put lots of stress on both of us. Also - you have to figure in major diaper changes into your schedule - we are now on a schedule, thank god. We cannot spontaneously get up and go anywhere - timing and planning are everything.

As I said - the care is doable - the vent only adds a little more work and is not overwhelming in itself. All of the other physical care - moving her legs to a comfortable position, lots of range of motion, suctioning, breathing treatments, cough assist - yada yada, and you can get tired. I did no cooking at all for six weeks - JUST got my house cleaned up from her coming home.

Granted we are in the early phases, and things are RAPIDly improving after a come-to-jesus meeting with the vent company (and having its national president visit our home). I anticipate even smoother operations soon.

Good luck - You can do it - but having help is good! Beth

[freddiesnetty]

Thanks for the insight...............I have been home for only about 3 or 4 weeks now and it has been a living hell. His wheelchair is still being decided on..........That is the biggest problem..He has been on his back in bed for about well, since June 30th. Ihave had to fire a nurse, so now I am doing this 24/7. I do not do too bad at night. He takes some ambien for sleeping. But still you have to wake up to turn him. He was sleeping in bed with me, but that got too uncomfortable for him and it wasn't the safest thing either, I woke up one evening and he had rolled over from his side a little too much and was face down, I heard this weird noise and it was him panting and freaking out, so that evening they brought a hospital bed, that has him depressed as we can no longer sleep together, I luckily have not had any medical problems with him(knock on wood) I did however give him a valium for anxiety........Well that did not turn out to well as he became very lathargic sp? for a few days. did not respond to well, today he looks better very sleepy though.....I am at my wits end, I also do receive 50 hours a week also, but have no one to give the hours as I can not find an aide to help me. I am a strong women but jesus christ it seems like they put these guys out to pasture. I am doing better today as I am praying for a miracle to get the damn wheelchair.....THAT is the big problem!!! They insurance does not want to pay the other 20k that is left over....I don't have 20k to pull out my behind either.....I am sooo frustrated with this whole damn thing...I hate this disease!!! It seems like we have to stand on our heads and scream to the world to get anything done...............I will keep screaming though............Thanks for the insight!!
Much Blessings to all!!
Annette Everett

[freddiesnetty]

I just noticed you posted that you had not cooked..........WHAT is that.........lol..........I forget to eat sometimes.........lol..........GOD will get me through this.....THanks for the post..
netty

[tom06]

I been having the doctor come to change track my once a mo. but
I think he has been wanting to quite . I need some advice on
how someone gets theirs changed. My wife wants to do it
but Iam affraid I choke before she got thru with no doctor incase
something goes wro
any advise be appreacicate

Thanks
Tom

[joelc]

Tom, this tracheostomy thing is still very new to us but my wife just changed my trache a couple of days ago. It went very well without any problems or concerns at all. Has your doctor had any problems changing your tube? If not then neither should your wife. I think it is marvelous she is willing to do it.

[CindyM]

Joel- thank you so much for sharing this with us. You are changing my mind about Trachs. Cindy

[tom06]

thanks I might try that its so much trouble getting all ready
I am on oxgen to.

Thaks for reply
Tom

[joelc]

Excuse my ignorance, but what's to setup? It takes about 5 seconds to make the change, so the whole time you are off the vent is less than 10 seconds. I am honestly not exaggerating .!

Cindy, Nothing would please me more than for PALS to consider getting a tracheostomy and vent! It really is not a big deal if you plan on having it done, and prepare ahead of time, and then actually have it done before it is an emergency. Quality of life has improved so much!
It I can do it anyone can!

[nspoc]

Hi Joel -

I think you meant me when you asked "what's to set up?" You are right - the actual vent attachment switch is 5 seconds or less.

The time comes in in arranging the tubes so they do not pull - getting her into the sling - manuevering the vent and chair into position - lifting and lowering while keeping tubes from pulling on trach, then disconnecting other vent and humidifier, turning off alarms. We have it down to a well choreographed dance - and it is still an endeavor.

Her arms have to be placed just so because she cannot do it herself - we only have so much length of tubing to manuever with - so there is a lot of wheelchair and vent-stand jockeying. We go slowly so as not get entangled in 2 sets of hoses and all the attendant wires - all of which have to be carefully positioned vis-a-vis six lifting straps on the ceiling lift.

It is very easy to pull on Pat's vent tubing- remember- we are moving within a confined space with a bed and all kinds of equipment to crawl around.

The actual attachment and tie-down of the vent to the trach is a cinch - it is the entire transfer procedure with a nearly completely paralyzed person that takes time and deliberation.

Take care - Beth