OT: Mike & I have Pneumonia!

[nanwilson]

Time for you to relax and enjoy your daughter and granddaughters visit Dori... Let the "dog with a bone" do her stuff and you just watch the fur fly. We don't want you to get so tired and run down that you won't be able to care for Mike at all, take a day or two and enjoy the visit, let others do for you for a change.
Give Mike a hug for us and please be well.
Love ya
Nan

[DoriC]

Here's an update that I'm sure won't be a surprise to most of you! I got a call from the Head Nurse yesterday telling me that Dr.C came in to see Mike early in the morning and insisted that he go back on the cpap machine since his lungs sounded almost clear and he was sure his lethargy and word slurring was caused by apneas. I brought the machine in, set it up and showed his nurse the mask and the setup. She was familiar with the QuattroFF but had NEVER seen the Resmed S9 Vpap or even the Auto or Elite. It seems Respironics is all they know and only straight cpap. So I made a quick decision to set him up to his original cpap setting of 12cm with EPR=2 which he first used for several years(thanks Den!). Here's the punch line! I left him last night in his usual state of lethargy,eyes closed and one-word answers with flat affect and prayed for the best with the cpap. I got a call this morning from...guess who? MIKE! He dialed the phone himself, spoke sentences loud and clear,remembered that the family was coming today and told me he wasn't ready for a nap yet. His nurse got on the phone with sincere amazement and would TRY to make sure he napped before we came. Of course, since my glass is usually half empty, I'm praying that this will continue. I'm anxious to see what the data shows. You're probably all thinking...I could have told you so!! I hope this thread will be a good learning experience about the importance of using the equipment faithfully unless there's a really true medical reason for not doing so.

[Julie]

Wow! Amazing! Good for you for not giving up! And so good that you got an MD and nurse with a few brain cells themselves. So glad Mike's 'back' too, and now maybe you can get some rest. Wonderful!

[echo]

Great news Dori!!! So glad to hear this. And it's all thanks to your dedication and perseverence! Here's wishing Mike a *very* speedy recovery from here on out.

[Madalot]

Dori,

Thank you so much for posting your update. I've been keeping you and Mike in my thoughts and am SO glad things are moving in a better direction.

We'll keep the positive vibes coming.

[HoseCrusher]

It is good to hear Mike is doing much better. Still praying for both of you. How long before Mike can come home?

[SleepWellCPAP]

Wonderful, wonderful, Dori!

So glad to hear things are going in the right direction!

Many blessings for the both of you!

[deerslayer]

[Wulfman...]

So glad to hear that, Dori.
Please tell Mike "Hi" from me, too.


Den

.

[chunkyfrog]

I'm so happy to hear the good news. The frog needs a tissue; --or four.

[jencat824]

Dori,

This is great news! Also a first hand testimonial that we should take our PAP machines with us when we are sick! I'll keep praying for you & Mike. Get some rest.

Jen

[Stormynights]

I am so happy for both of you.

[DoriC]

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!

[Hawthorne]

How very frustrating!!! It seems like 2 steps forward and 1 step backward! Maybe now that the weekend is over, you MIGHT get through to someone! I hope so Dori!

[kteague]

Dori, that stuff is maddening!!! I can't begin to say what you should do. The angry inner me wants you to meet with administration and threaten a lawsuit for medical neglect over the incidences with his machine, and demand they put a night shift sitter in his room at no cost for the express purpose of monitoring his CPAP. What I'm wondering is, if he's on oxygen he should be monitored and an alarm should have been going off when his CPAP stopped. Why in the world is anyone known to have sleep apnea and need oxygen not be on a monitor? If he is on one, I'd want to see copies of those records. I'm so sorry to hear this. When my mother was in facilities a lot, I liked to count on allies within the staff. A few times the neglect was so egregious it became necessary to forget being nice and go to battle. Hope you have clarity on this. And really hoping Mike can get the help he needs to turn this around. Hugs to you sweet Dori.