Narrowminded Continues - part 2

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Re: Narrowminded Continues - part 2

Post by Vh67 on Sun Sep 02, 2018 10:15 am

Kathy has so much wisdom in her post, I don't know what more to add other than you always welcome to pm me as well. I have not been in your situation but I have lost both my parents so I may have some understanding of what your kids are feeling. I remember feeling so protective of my mom after my dad died. And she was trying to protect us kids. The loss of my mom occurred after she had been in ICU for 7 months. It was expected but nothing prepares you for when it actually happens. You and your family continue to be in my thoughts.

I am glad your friend is trying the AIP. I used to be far more strict and need to tighten up my eating since, I too, fear losing bits and pieces of the ol' colon. Even if he just makes a few changes, things should improve.
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Re: Narrowminded Continues - part 2

Post by Lovebird on Sun Sep 02, 2018 1:38 pm

^ What they said, both of them. Wise words and lots of caring and love.

All of you are in our thoughts and our prayers. (((HUGS)))
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Re: Narrowminded Continues - part 2

Post by Narrowminded on Sun Sep 02, 2018 7:29 pm

What would I do without my tribe?

Thank you all.

Kathi I will check the vent pressure. I have increased the tidal volume a little, but will check the other.

I’m sure it will be devastating. That’s what concerns me, with DD in a very demanding PT program to have this happen during a semester would be extremely rough. I know it won’t be easy any time, but I don’t want it to mess with her schooling. At the same time, I can’t stand watching DH suffer like he is lately.

V - we already have the mother/daughter thing going on. I try to protect her and keep her life as normal as possible, but she worries about me, moreso now that she’s and adult.

I know we are in for some rough waters ahead. I’ve watched so many go through this on the ALS forums. I always try to learn from others, and I’m trying to learn from those who have loved and lost as well. I know nothing will completely prepare me, but at least I have an idea of what to expect.

I’m hopeful on Tues I can get some other meds from the Dr to help with this. I know if we could have hospice, I’m sure he’d be on morphine or the like, but we can’t, so he isn’t. Not easy going this alone. Dumb state regs/health care today.

Food has been good again today and I have about 1500 steps to go, so I will get those too.

DF made his half way point and is staying with friends, so that is good news. His book will arrive on Tuesday and then he can really get into the meat of the diet. I did warn him it’s going to be a huge change (I didn’t say what) and that he should prepare to feel worse before feeling better, but to stick it out. Also told him I’m just a phone call away if he need help figuring something out.

Have an awesome evening all.
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Re: Narrowminded Continues - part 2

Post by The Walrus on Sun Sep 02, 2018 7:58 pm

+1

Thinking of you and sending positive thoughts. Would you mind sharing DH's vent settings? Do you play around with them to try to make him more comfortable, or do they stay the same? I'm sure you are expert at this!
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Re: Narrowminded Continues - part 2

Post by Pedidoc on Sun Sep 02, 2018 9:23 pm

The Walrus wrote:+1

Thinking of you and sending positive thoughts.  Would you mind sharing DH's vent settings?  Do you play around with them to try to make him more comfortable, or do they stay the same?  I'm sure you are expert at this!
Please share with TW either here or by PM.  You can have a direct consult with an RT!
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Re: Narrowminded Continues - part 2

Post by Pedidoc on Sun Sep 02, 2018 9:26 pm

I would think in this instance the physician could prescribe morphine.  It comes in a liquid and could be given the same way his feedings are (I forget if he has a GTT or PEG).  Since the main worrisome side effect is respiratory depression and he is on a vent, I would think it would be a no-brainer.
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Re: Narrowminded Continues - part 2

Post by Narrowminded on Sun Sep 02, 2018 10:07 pm

I can look up all the settings. I checked the PIP. He is on a Trilogy so that is self setting. You change the VTE, which has been moved up to 610. The other settings are ramp, sigh, alarm levels, time until alarm after a disconnect, BPM, inspiratory length. I have played with some of them in the past. The biggest problem is anytime someone makes even a minor change to the vent, he freaks. We will see.

He is currently in sleeping, so will get the exact numbers for the others in the morning.

Sat with him this evening and that settles him some. However I can’t sit 24/7

Getting ready for bed myself. Was up several times to use the bathroom last night. That was annoying.

I have a nurse tomorrow, so I have to finish payroll and a few other works related things. Also get some groceries.

DD will be heading back at some point.
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Re: Narrowminded Continues - part 2

Post by Greensprout on Sun Sep 02, 2018 10:12 pm

My heart is with you, this is clearly a difficult time. I wholeheartedly echo what Pedidoc said above.

Hugs to you and wishing you a peaceful night.
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Re: Narrowminded Continues - part 2

Post by Rig D on Mon Sep 03, 2018 7:49 am

Nothing constructive to say, but still solidly in your corner.
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Re: Narrowminded Continues - part 2

Post by Narrowminded on Mon Sep 03, 2018 8:36 am

Thank you GS and Rig.

This morning he woke with much better vitals. He saw the nurse was here and his eyes got huge. I’m hoping he doesn’t fall flat into an anxiety attack. Assured him I’m in the kitchen, then have to go do payroll upstairs.

I do have to leave a bit later for some groceries and my own meds, but will try and sneak out.

I hope everyone has a relaxing Labor Day and enjoys the long weekend.
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Re: Narrowminded Continues - part 2

Post by tomi1000 on Mon Sep 03, 2018 4:53 pm

My heart aches for what you all are going through. I totally understand your concern for DD, but these things just don't cater to what is best for others involved. It will be difficult no matter when it happens.

I so hope and pray he goes peacefully as he sleeps.

With you in my thoughts and prayers.
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Re: Narrowminded Continues - part 2

Post by The Walrus on Mon Sep 03, 2018 5:48 pm

The Trilogy is a great machine, I'm glad to hear he is on that. Freaking over vent changes - oh yeah, I get that! People on vents often freak if someone even LOOKS at their vent. (I would too.) What is his normal respiratory rate? Is he on oxygen?

If - and it's a big IF - I was going to change any settings, I would try changing the inspiratory time just a little to see if a shorter or longer time might be more comfortable. Normal - if there is such a thing - is one second, but .8 (breath is given faster) or 1.2 seconds (breath is given slower) are common options. Obviously I don't know where he is now. And so I shouldn't say any more without knowing tons more and it is probably unethical for me to throw out advice like this.

Not even close to an MD, but I always advocated for both morphine and Ativan for end stage patients. They can be given alternately or together. The morphine helps with the air hunger and the Ativan with the anxiety - a two-pronged approach. As Pedi says, he's on a vent, so respiratory depression isn't an issue. You'd want to keep an eye on his blood pressure.

The more I think about this, the more astounded I am that you are facing this alone, not discounting your wonderful children, but with so little medical help.

Hoping all is going well and DD arrives safely.
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Re: Narrowminded Continues - part 2

Post by Annieh on Mon Sep 03, 2018 6:16 pm

The Walrus wrote:

The more I think about this, the more astounded I am that you are facing this alone, not discounting your wonderful children, but with so little medical help.


I am completely astounded by this, and have been all along.

Walrus, I admire you stepping out with some advice for NM.
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Re: Narrowminded Continues - part 2

Post by Angela on Mon Sep 03, 2018 10:48 pm

And also from what seems like a lifetime ago (but really only a few years past), I am here too, and like Rig, in your corner. Good to be reading you again, NM. So sorry that you continue to be stretched beyond the limits of what most normal people are capable of handling. You are a warrior of rare and precious mettle, and I hope you continue to care for yourself as well as you care for everyone else in your life. I’ve missed you, lady!

Sent from Topic'it App

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Re: Narrowminded Continues - part 2

Post by Narrowminded on Tue Sep 04, 2018 8:50 am

Angela - it’s so great to see you here!!! I’ve wondered so often about you. We have much to catch up on girl.

Ok, first a general update on DH and then will tackle TW’s questions.

Yesterday, as mentioned he woke up great. The big eyes from the nurse quickly passed and the day was fantastic. He stayed calm, smiled a lot and actually was sleeping when I headed out and still asleep when I got back so he was none the wiser that I wasn’t there.

This morning he has again woken in a good place. It’s crazy the way he turns right then left then right. Generally I can’t keep up.

TW - His respiratory rate is 14, been there from the beginning 8 years ago. His inspiration time is 1.9. It used to be lower, but never below 1, we moved it up over time w/the RT to find a comfort spot for him. His tidal volume is currently set at 610. Oxygen is usually contraindicated for ALS patients due to CO2 build up from the weakened lungs, but the vent changes that because it handles the CO2. For most of this journey he has been room air. If he had pneumonia, he would be on it for short periods of time and then be weaned off.

Currently these past 2 days, I am again able to wean him back. As of this moment he is at 3.25 L/m approx. When he gets his anxiety attacks, the only thing that will get his SATS reasonable is really cranking up the O2. He will even ask me to check them when he feels air hunger. And usually, but not always he’s correct.

He currently gets Ativan, have been unable at this point to get morphine. April of 17, when he was really bad then, the nursing supervisor asked for morphine and they ordered Oxy. I still have some left from then and use it judicially when he’s really bad.

If you want further settings from his vent, just ask. His flow pattern is ramp and he does have the sigh feature on.

It’s crazy because over the weekend I would have changed anything and everything to make him comfortable. Yesterday and today, I don’t want to tweak a thing as he’s really good

Basically I think the main problem is that his body is shot. He is basically skin and bones, so his body can’t self regulate anything as far as I can tell. Occasionally he will have a temp. Then other times no. We’ve tried antibiotics and they make no difference at all so, I don’t believe there is an infection. I think it just is what it is.


You are all correct, I should have more medical help. However, I have Obamacare and State Regs to thank for the fact that I don’t. We lost our private duty when Obamacare came into existence. All insurances dropped it. It was then and only then I moved him to medicare. Medicare doesn’t cover it either.

In our state, hospice is a no go with a vent unless you are doing a death wean. They’ve also mandated that any home health nurse that steps into our home be vent certified and they become the primary care giver for the 15-60 min that they are here, regardless that I am the primary 24/7/365. None of the home health nurses here are vent certified so I can’t get them in to check on him. We also don’t have physicians that make house calls outside of Hospice ones - see above.

We can’t get nurses through a waiver program because we don’t fit the income parameters. We actually worked for a living, and we dont’ have a child under 21 in the home. Even if we did, they want payback when death finally comes knocking from the estate.

So, as is my usually thought, I’m on my own little island paddling further and further out to sea. I guess my next stop is Hawaii and then I will probably make it to Australia and NZ eventually. See Annie, I told you I’m coming to visit. Smile

Have an awesome day all
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Re: Narrowminded Continues - part 2

Post by tomi1000 on Tue Sep 04, 2018 12:22 pm

This is absurd and totally unacceptable! I'm so frustrated for you! But - then again, it is what it is and frustration will not change it. You and your DS and DD are doing an amazing job.

Obamacare sucks for the middle class working family.
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Re: Narrowminded Continues - part 2

Post by The Walrus on Tue Sep 04, 2018 7:39 pm

I'm assuming you change his trach regularly? Do you do this yourself? What type/size? Do you suction regularly, and how does he tolerate?

Questions...questions...I wish I could get on a plane and spend some time there. Not that I am any kind of miracle worker, but my first job (4 years) was in a long term acute care facility with loads of ALS patients. Incidentally, this facility is now closed because of Medicare changes. GRRRRRRRRRRR.

I have no idea how this scenario plays out here in Australia. I'm afraid to ask.
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Re: Narrowminded Continues - part 2

Post by Pedidoc on Tue Sep 04, 2018 7:53 pm

Again, just my opinion, it is my experience that patients rally for a time before the end.  I hope that I am wrong, but it just seems that there are more downward spirals.  

I wish that I was closer, as thoughts and prayers just do not seem to be enough.
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Re: Narrowminded Continues - part 2

Post by Narrowminded on Tue Sep 04, 2018 10:45 pm

TW - he knows when he needs suctioned and it happens during the day mostly. It’s variable from day to day and we also used a cough assist machine as needed as well. He no longer tolerates a nebulizer, so that’s out.

As to his trach, generally I change it myself with someone else present to assist. To dangerous to do alone. Originally he had a Shirley 6 with changeable inner canula. That was then changed to an 8 as the continued weight loss caused his stoma to enlarge. He now has a Shirley 6 again, but this has a longer distal length. His Dr felt we were not getting a good seal due to erosion in his trachea from years with the trach. However, the first 5 years the cuff was down and he spoke around it. It is now changed every 3 months. It used to be once a month, but Medicare will only allow it every 3.

As to Australia, the vent is not an option for ALS patients there. I know that through the forum.

Kathi - I totally know and expect the rally before the end. Actually he rallied the weekend before last and I questioned that Sunday that was so very good. The week went downhill from there, so I thought it was exactly what happened. This could be another of those, and I do expect those downward spirals to continue and become more frequent.

Food was excellent today. Steps continue 246 days I believe now.

Mom reports her belly is hurting again. Not good. And Dad was acting up. Cipro should have the UTI healed by now, so this seems to be a new normal. Hopefully they will eval him very soon and a bed will open up for him. Not sure what we will do if Mom has to go back to the hospital I def cannot bring him here again - sadly.

Have a great night all
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Re: Narrowminded Continues - part 2

Post by Pedidoc on Wed Sep 05, 2018 9:36 am

Hoping you had a great night and are now refreshed and ready to rock another day.
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Re: Narrowminded Continues - part 2

Post by ONTARIO on Wed Sep 05, 2018 9:38 am

Narrowminded.....I can't even imagine what you go through on a daily basis. But I do know that your husband is an incredibly lucky man to have such a caring, wonderful wife who very clearly loves him very much.

I think about you often and even when I don't have time (or feel like) to post I come here just to read your journal hoping all is well with you. I pray that when the times comes he will go in peace and you have the strength to get through it all.

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Re: Narrowminded Continues - part 2

Post by Narrowminded on Wed Sep 05, 2018 12:51 pm

Ontario - Thank you!

Yesterday continued well and DH again woke in a good place.

Talked with Mom and her belly was all better this morning. That’s huge. Plus she’s finally starting to do her own things too. She left dad in the dining room after breakfast. He was falling asleep. I think she’s testing the waters for when he moves.

Speaking of his move, I’m waiting for the home to call me back so I can see where we are with his move situation

For the moment, life is good. Catch up later.

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Re: Narrowminded Continues - part 2

Post by Meant2Move on Wed Sep 05, 2018 2:50 pm

Just caught up with your whirlwind. Hugs to you as you navigate the crazy seas. Stay calm and keep walking/paddling.

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Re: Narrowminded Continues - part 2

Post by tomi1000 on Wed Sep 05, 2018 5:32 pm

Like Ontario - I go to your journal right after posting in my own. I read whats happening and then I pray for strength and for His will to be done in your home. I think of you and your family often through out the day, and always ask for His presence to be with you.
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Re: Narrowminded Continues - part 2

Post by The Walrus on Wed Sep 05, 2018 5:45 pm

Just checking in to see what's up in the NM household today - glad everything is under control. I think of you all the time and imagine courage and strength gathering around you.
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Re: Narrowminded Continues - part 2

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