OT: Mike & I have Pneumonia!

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Wulfman...

Re: OT: Mike & I have Pneumonia!

Post by Wulfman... » Mon Apr 07, 2014 11:51 am

DoriC wrote:Weekend Disaster!! Long story but Mike's machine was turned off after 2hrs Fri night and after 2.6hrs Sat night. That included his attached oxygen. He never opened his eyes all weekend while his family was here. My daughter raised holy hell but on weekends there's no "real"supervisor in charge. I stayed until 9:30 last night to show the nurse step by step and found out that these stupid, stupid nurses thought that when the led turned off after a few minutes they thought the machine stopped so she pressed the button Again and of course that turned the machine OFF! She never checked Mike's mask to see if air was coming out. They complained that during the night he somehow struggles to take his mask off. Of course he does, he's being suffocated by no air and no 02!! I'm going there in a little while to do battle and I've left a message for our Dr. But at this point I'm afraid to leave him alone with the machine no matter who I try to show what to do, he needs constant supervision during the night and I think they just pass by his room and if they see his mask on they assume it's OK and they move on to the next room. At this point I really think he needs the oxygen more than anything. We took him outside in the sun yesterday with the portable oxygen and it clicked to empty after about 20mins and he really struggled until we got a full one attached. So you can imagine what's happening during the night if the machine is being shut off. I can't express my anger, frustration and fatigue at this point. I feel helpless. I spoke to a few people who used other rehabs in the area and got the same so-so opinions. At least at this one I know my enemies and who I'm dealing with. I did make a few "friends" on the staff and will try to get them involved but the Nurse Supervisor honcho is a tough cookie to deal with and unpredictable. Thanks for listening!
OMG!!!
I would suggest going to the administrator of the facility and express your anger. Is he actually in a hospital or that type of environment? That's unacceptable. And, then if you feel some resistance, I would hint at some legal recourse options.


Den

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Re: OT: Mike & I have Pneumonia!

Post by Janknitz » Mon Apr 07, 2014 2:24 pm

I would think Dori, that if the O2 concentrator or tank are running and connected to the mask, Mike will still AT LEAST be getting some oxygen, even if the CPAP is off. But the oxygen concentration might be lower because it's not going directly into his nose since the anti-asphyxiation valve should also be pulling in room air since the flow from the oxygen device is probably not enough to keep the valve closed. And oxygen supplementation doesn't do much good if the airway is closed, however.
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Re: OT: Mike & I have Pneumonia!

Post by kaiasgram » Mon Apr 07, 2014 4:23 pm

Dori, I'm sure a lot of us would love to offer you much more than we're able to from out here in cyberspace but please just know that there are a lot of prayers being offered up for you and Mike. I can only imagine the exhaustion and helplessness you've been feeling and I just hope that where others can step in and advocate for you and Mike, you are letting them do that for you.

I so appreciate you taking the time to update us on this forum. I'm holding you and Mike in my thoughts and in my heart -- kaiasgram

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Re: OT: Mike & I have Pneumonia!

Post by jencat824 » Mon Apr 07, 2014 8:00 pm

Dori,

From my recent 'experience'with rehab, I would suggest you ask for a meeting with the facility administrator AND the medical director TOGETHER. I had some serious issues with my MIL that led to the amputation and my relationship with the medical director was not good. I found pinning them down together got me closer to my goal of having the facility follow the wound care surgeon's directions. Make sure they agree to put around the clock oxygen monitoring in place. His oxygen is the most important issue, next issue is his PAP therapy.

Involving your Dr. is also very important. Tell him that your husband's care is substandard and hopefully he will contact that facility administrator too.

You already have identified your 'friends' & 'non-friends' so work within that network too. You might try finding out who will be working night shift & making sure the night shift nurse & the cna know how the machine works.

Also you might add typed instructions for the wall nearest the machine, including how to tell if machine is on. You might want to warn that no one should hit the on/off button after it is in operation.

I hope some of my suggestions help. You & Mike are still in my prayers.

Jen

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Re: OT: Mike & I have Pneumonia!

Post by Olivia » Mon Apr 07, 2014 9:47 pm

Hello, As a long time RN manager of emergency departments and other clinic services, I want to put in my two cents. Definitely, demand an appointment with the Administrator. Any staff working with CPAP, oxygen and pulse oximetry must have had training and completed successfully a competency exam that includes return demonstration and an understanding of how equipment functions. Nurses do not normally receive any training regarding Cpap. They should also have respiratory therapists available to consult. Insist that they have one come in to consult with you and the staff.
They should also have information posted regarding who you should contact if you are having problems with the level and quality of care. I don't know about NJ, but most places in CA have an Ombudsman you can contact. Also contact the DHS , Department of Health Services. It's time to stop being even remotely nice. If they are accredited by the Joint Commission I would contact them also. Or contact whomever credentials them and tell the rehab you are going to do so. Tell the rehab you want action now and want to know what their corrective action plan in and how they will prevent further problems. Most doctors are only there briefly during the day, it's the Administrator who should correct these problems. It doesn't hurt if the physician complains also. Best of luck to you. Olivia

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Re: OT: Mike & I have Pneumonia!

Post by Jersey Girl » Mon Apr 07, 2014 11:23 pm

Doti,

I haven't been on for quite some tme (been unemployed for 10 months and tag teaming between a sick mother and brother). I was alarmed to see your post about you and Mike. I am glad that you are both on the mend and will keep you both in my heart and in my prayers. Sending you virtual hugs!

Debby

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Re: OT: Mike & I have Pneumonia!

Post by Starlette » Mon Apr 07, 2014 11:49 pm

(((Hugs)))

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Re: OT: Mike & I have Pneumonia!

Post by Roger2 » Tue Apr 08, 2014 10:44 pm

DoriC wrote:Weekend Disaster!! Long story but Mike's machine was turned off after 2hrs Fri night and after 2.6hrs Sat night. That included his attached oxygen. He never opened his eyes all weekend while his family was here. My daughter raised holy hell but on weekends there's no "real"supervisor in charge. I stayed until 9:30 last night to show the nurse step by step and found out that these stupid, stupid nurses thought that when the led turned off after a few minutes they thought the machine stopped so she pressed the button Again and of course that turned the machine OFF!
I also have oxygen bleeding into my cpap hose at the base where it connects to the machine. Mine is set fairly high per my pulmonologist's orders such that my sleeping concentration level is 96% in an average overnight. I had my mask on earlier with the oxygen connected as usual and ran it for about 10 minutes to get my saturation level stabilized at 96%. I was curious to see if the cpap machine being turned off made a difference in my saturation level so I turned the cpap machine off for 10 minutes and my saturation level remained at 96% as I thought it should. I don't have instruments to measure the carbon dioxide level in my mask but it seemed fairly stale. I am not sure if that can cause any permanent problems but I have had my cpap machine go off during the night before and haven't noticed any problems associated with that.

Hopefully, is care facility has looked into what happened to insure it does not happen again.

God Bless,

Roger

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Re: OT: Mike & I have Pneumonia!

Post by DoriC » Wed Apr 09, 2014 9:19 am

Thanks to everyone for the blessings, received with an open heart!

@Olivia, thanks for all that useful info. I decided to make my first line of attack our Primary Dr who's been taking care of us for many years and recommended this place as the best of the alternatives around here, so I made an appointment with him for tomorrow at 3:30. He also wants to check me to make sure I'm completely over my pneum. If I'm not satisfied with the results I'll take some further steps you suggested. I think I finally have the staff on board with the machine, it's registering 6 to 7.5hrs the last 2 nights and even though his AHI and leaks are higher than I'd like, I think lots of those ticks are due to restlessness and being in a hospital bed even though they gave him one of those air mattresses. His nose is looking a little messy so I told them they're pulling the top straps too tight and they're using Bacitracin/Zinc ointment during the day after I had to point it out to them. He's looking a little more alert and staying awake more during the day and talking a bit more so I'm encouraged. Of course, tonight his regular nurse is off but she said not to worry, HAH! So I'll be there at 3 today when the new one comes on and will try to "educate" her. I have a few more battles to win such as changing his wheelchair which is falling apart and something about his personal needs which are being neglected. So in between the battles I think I'm beginning to see a glimmer of hope. His surgeon came in last night to check his tushy wound (looks good) and I asked him as a joke if he could stay with Mike all night! He answered me very seriously and said "I can't do it but it's not a bad idea". I asked around and was told a private aide charges $200 for an 8hr shift and an RN charges more.

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Re: OT: Mike & I have Pneumonia!

Post by JDS74 » Wed Apr 09, 2014 1:03 pm

Dori:
Does the Resmed S9 have an auto on feature? If so, can you turn it on so that if the nurses turn the machine off, it restarts itself? I assume it does since the corresponding Respironics machines do.

Does the headgear come off using clips so that the adjustment needn't be done each time the mask is put on?
That might help with the misadjustment problems.

Have you got a copy of the user manual for the machine? Print one out, mark it as Mike's together with his room number, and leave it in the room next to the machine. Not the provider's manual - no sense encouraging them to mess with the machine.

Make a machine on check list:
How to turn it on.
How to check for air flow.
How to check the humidifier reservoir.
How to check for proper mask fit.
How to call you if there is a problem.
How to shut down in the morning ( or whenever ).
Anything else you notice there have been problems with.

If you could use help in writing such a check list, I would be glad to help. We could make the list a group activity with many contributors. If pictures would help, we could place them on line in a place like Photo Bucket and then they could print when the final copy was made.

On the issue of Mike struggling with his mask (because of machine off) perhaps a demonstration done with putting the mask on the nurse/aide with the machine off so they can see what its like to try to breathe under those circumstances. If they experience it, perhaps understanding will come.

If you think that having a Respironics machine would be better in the environment, is there someone close who uses one and has a backup machine they could loan you and Mike for a few weeks?

Let me know if there is anything I can do to help.
{{{{Hugs}}}}

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Re: OT: Mike & I have Pneumonia!

Post by jencat824 » Wed Apr 09, 2014 9:28 pm

Dori,

Glad to hear things are improving. I'll be happy to help with any project that will help you out. Still praying...

Jen

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Re: OT: Mike & I have Pneumonia!

Post by Stormynights » Wed Apr 09, 2014 10:09 pm

Thank you for the good news Dori. Still praying. Keep us posted.

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Re: OT: Mike & I have Pneumonia!

Post by beautifuldreamer » Wed Apr 09, 2014 11:10 pm

Dori you have been through a lot - you have shown a lot of courage and perseverance in the midst of a very difficult situation. Praying peace, comfort, rest, for you, and total healing for Mike. Bless you bunches !!!
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Re: OT: Mike & I have Pneumonia!

Post by DoriC » Thu Apr 10, 2014 8:57 am

I've been trying to write up a simple instruction list but I'm drawing a blank along the way. I will definitely turn on Smart Start, good idea, and I did forget to show them how to check Mask Fit but I'm drawing blanks on how to write it up as well as the tips for sealing the FF mask. He just uses passover HH and water lasts a long time so I just had to bring some dist.water yesterday and filled it. I wouldn't trust them with that anyway. I hate to bother anyone but if someone with an S9 has some time to write up a simple (and I mean simple) instruction list for me to get me started, I'd so appreciate it. I finally turned off my "nice" button yesterday when I came and found him in bed in the middle of the afternoon without his 02 cannula in his nose and his call bell on the floor and no urinal nearby so he was wet, sorry for the details but I want you to get the picture of what made me finally snap! He was completely lethargic and could not be roused, his readout on the machine showed 142 leaks, AHI was meaningless at 20, hrs used=3.5. I finally got through to them that when the leak is so high the machine shuts itself off and Mike is SUFFOCATING until thank God he wakes himself up and takes off the mask. They've been complaining that he takes the mask off himself for NO REASON!. Long story but I got the night Supervisor, speech therapist, physical therapist and a few others on board, today is meeting with Admin and Day Supervisor where I will request a Resp Therapist come in for training sessions with all shifts, after my visit with our Dr who will order that I'm sure. I've got my notes ready for these meetings but with the simple machine instructions I'm drawing a blank! I spoke to Mike briefly this morning and he sounds better, said he slept much better so we'll see if I scared them straight!

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Re: OT: Mike & I have Pneumonia!

Post by library lady » Thu Apr 10, 2014 9:20 am

Dori, I am so sorry this is happening! I don't use S9, I have System One so I can't help you. But I'm thinking that you should tell them to wake Mike and have him put the mask back on, and turn the machine back on... make sure the cannula is back in place as well. I've done a couple of stints in rehab, with my knee replacements, so I know what it's like with staff.

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