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Home from the hospital


michellep

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As I posted in the hall pass section, had to send hubby to ER last Tuesday for pneumonia. He was on 24-7 antibiotics, they ran a ct scan and took x-rays daily. Then yesterday they came and suggested a rehab facility (which is a convelescent home also) for about two weeks. The doctor said that since he's so weak it would help him. They "hadn't any test results" back but said he was better? I didn't agree that he was ready for discharge but they did it anyway. I drove him from the hospital over to the rehab facility and let me tell ya.....it was a living nightmare! They were NOT prepared for him AT ALL! They had me put him into the bed, unpack all of his things (after labeling with his name due to thefts) and we waited and we waited....about 2 hours later an RN came in and told us they didn't have all the meds needed but would order and have delivery on Monday. MONDAY? Plus, you're gonna fall out of your chair over this my friends.....the RN could barely stand up! He must have some physical illness of some kind, I don't know what, but he kept having to sit down and he was shaking so badly it scared the "poo" out of us. He then stood over my husband to look at his feet (don't know why) and almost FELL on top of him. OMG And this RN is supposed to access my husbands port? Needless to say, I packed my husband up and took him home. Finally arrived home at 3AM this morning. I don't know what to do now, I really don't. I still think he has the pneumonia and he is just so weak. I'm scared that he'll fall down or that I'll get to the point where I don't have enough strength to lift him myself.

Thing is....I can't call hospice now. His July CT showed improvement and he just started Tarceva. I want to wait and fight some more...but how????

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Oh Michelle!! Is there any way you can call the oncologist and let him know what happened at the "rehab" facility?

I have a theory about why that nurse was looking at your husbands feet, and I'm telling you I would have RUN out of there too. GOOD for you.

Is it possible to get home healthcare in for a couple of days to help with your husband or family or friends over to help you guys thru the weekend?

If you think things are going to get more difficult or you think he's still suffering from pneumonia I'd go straight back to the ER.

(((hugs))) I'm so sorry you guys are going thru all this!! It sounds like a nightmare.

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(((((((Michelle)))))

Sounds like a real nightmare at th place. Good for you for packing him up and taking him home.

Can you call and find out if theres another rehab place to bring him to??? Call your doc and let him know what happened. Maybe there are other places and it sounds like the one you were at needs to be reported and the docs need to know NOT to send anyone else there.

Good luck - I am so sorry this is happening to you.

PLEASE kepp us posted.

Hugs - Patti B.

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Michelle, this is not excusable. Get in touch with the doctor who released him and make the doctor responsible for getting him proper treatment. It doesn't matter that it's the weekend, call anyway. This really makes me feel so angry to think people can be treated this way. It's wrong.. make them make it right. I'm just so sorry this has happened to you both. Keep us updated.

Hugs,

Sue

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At least get him through the weekend. Is there a way you can research other facilities that provide better care and conditions????? We did this on the Fly for my Dad one time when he was released to a facility! If I can help let me know in this matter!!!

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Since it's the week-end I most likely won't get in touch with anyone to let them know what happened, but I did send a fax to both the PCP and the Insurance company letting them know. In the meantime I'll work with hubby for a bit of physical therapy. I've always been present in the past when he had therapy, so I'll just have him do the same.

I can't stop thinking about the fear I saw in his eyes when we were at that facility. I honestly think he was afraid that I would leave him there and he would never come home. I know it was just for physical therapy but it's also a long term facility and it was frightening for both of us to even be there. I realize that I'm exhausted physically, but with as much love as I have for my husband I'm sure that I'll be able to pull up my boot straps and do what's necessary.

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Michelle,

I'm so glad you got him the heck out of there. But I also know how overwhelmed you must feel right now. I KNOW you will find your way through this one too. Are there any home health agencies (NOT hospice, just visiting health care providers) who could maybe help?

I'm praying for you both. So sorry for this latest crud to slide your way.

(((((Michelle and husband)))))

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Since it's the weekend I most likely won't get in touch with anyone to let them know what happened...

Sometimes don't you just hate weekends? Seems like the worst things usually happen late on a Friday. I think everybody should be on duty 24-7 like the rest of us! Or at least readily avaiable by phone even if the office is closed. But you're plenty resourceful and I know you'll be okay, Michelle. Aloha,

Ned

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After faxing the hospital, Pcp, Medical Group, Oncologist and calling the Case Manager....I got a phone call today telling me that there have been "immediate arrangements" for a home health nurse to start IV antibiotics every 6 hours for the next 14 days! PLUS, physical therapy visits 2 times a week for the next 6 weeks!

I asked "why" we were suddenly be treated with such wonderful care and was told they were afraid of a lawsuit because he was sent to a facility that was not prepared to care for him even though they said they were.

I never thought of a lawsuit! hummmm :wink:

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Hey Michelle-

Once again, you ROCK!!!! I am so happy to hear that your hubby is going to get this care.

I don't know about your state, but here in Ohio, there is an ombudsman through the State of Ohio that deals wih complains on nursing facilites. I had used them to check out some nursing homes for my MIL. They will take complaints and investigate if they feel its necessary. That facility they sent your hubby to should be reported and investigated.

Good luck and hey, while hes getting his PT, you take a very well desered nap!!!

Hugs - Patti B.

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Michelle, here I am coming in on the tail end of this most recent crisis. So sorry you had to go through this. I do so admire your tenacity in taking the bull by the horns each time you get dealt a dirty deal. Sounds like things are set up properly for now and hope you take advantage of the time to get some much needed and deserved rest.

Judy in Key West

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Michelle, I missed this update yesterday, but I have most certainly been thinking about you and your hubby. Sounds like hubby is finally getting the care he should have been offered in the beginning. It's horrible to think you had to live through such a nightmare to get it. Hope everything goes well from here. Continued prayers coming from here.

Hugs,

Sue

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Had a follow up appt with the PCP on Thursday due to the 9-15 to 9-18 hospitalization for pneumonia. I asked if any of the test results were in yet because upon discharge they weren't ready. (?) He said he still didn't have them which really upset me. I said, well, you have me giving him IV antibiotics at home for bacterial....what if it's fungal? This would require a completely different approach to treatment. He said he would get the results and fax to me asap. (yea right) He then told my husband...."I didn't think you'd make it past four months and here we are on six! I thought I was going to kill that man!

Anyway, got the test results yesterday via fax. He never called me. I read the sputum impression and sure enough....it's FUNGAL! Good God! I called the onc doc (I've had it with this idiot PCP). They accessed the reports and said they would be calling in meds for fungal immediately and also told me to stop the Tarceva until we can confirm a dangerous side effect called interstitial pneumonitis suspected on the CT scan.

I was such an emotional wreck I posted for a hall pass just so I could take some time and let my pain turn into anger with this doc....which it indeed has. I'm going to call the insurance company on Monday to make "sure" all medical records will follow him and find another PCP. I should have done this months ago. I think to myself....obviously cancer has never affected a loved one of his or he wouldn't do this to us. As much anger as I feel for him, even I can't wish this kind of pain on him.

I'll keep plugging along and give my husband all these antibiotic (Seven of them) and hopefully in a few days he'll begin to feel better and get some strength back. Please pray for him?

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((((((Michelle)))))

I am praying for the both of you. So soory you are having all this trouble.

Could your onc possibly recommend a new PCP that maybe he has a good relationship with so communication betweeen the two would be easier??? Just a thought.

Keep us posted and try to get some rest.

Hugs - Patti B.

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(((Michelle))

What a mess indeed! I am so angry for you- what a JERK!

I'm so glad you're going to a new doctor and I'm even more glad your husband has the meds he needs now to make a turn for the better.

Hugs and many prayers that things get better now.

(((hugs)))

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