NEED PRAYER NOW

nu2see · Mar 4, 2016

Father in heaven, please continue to uphold Lynn and John, Lord.
This has all been so exasperating,
and you know her faith has been strained
near to the point of giving it up,
but she's still plugging along, Father,
showing great courage and example for many of us.

We know you haven't left her nor ever will, Lord.
We ask, though, that your presence and comfort
be with her in a more intimate way.
Grant that she would gain re-newed strength
from your love and presence, Lord,
and we pray continually for your healing hand to be upon John.

We do ask for a miracle, Lord, we also ask
for more of a fresh supply of your grace to bear.
We even pray for a way for joy, even laughter,
to be a part of their daily supply,
as the joy of the Lord is our strength,
and laughter does good like a medicine.

And bless everyone here who's been praying for them, Lord,
and giving such wisdom and encouragement,
for your goodness and mercy to be more real in all our lives,
for Jesus sake and glory. Amen.

Lynn, feel free always, to pm, if there's any way
I can help out. Contact with the church, (TenthPres.?)
or visiting with any supplies or help at the house, we'll get it there.

Miri · Mar 4, 2016

Amen...

Hi Lynn, just a thought maybe when you speak to the various staff
you could ask them to put down their comments in writing. Say it's so
that you dont forget. Then when one contradicts the other you can
ask them to explain.

Or there again maybe it would be better to leave it all to God to work out.
Maybe the staff themselves don't realise the left hand does not seem to know
what the right hand is doing.

Depleted · Mar 5, 2016

nu2see said:

Syd? Is that you? (If it is, didn't know you left and came back. You're too quiet. Men! Usually too quiet for women. lol If it isn't, never mind. Thought you were. lol)

Update:
Okay, saw John at rehab today.

I just read my last few posts. Man, that last place made me nuts(ier). Big sigh of relief. BIG sigh of relief!

The worse things are
-- can't close the door because there's no inside handle.
-- He's Charles, not John. (Someone used his middle name on his door. At first I thought it was a coincidence there were two people in the same wing with the same Polish last name. lol)
-- They woke him up at 5 AM to feed him. (Ummm, sure beats waking him up twice in the middle of the night to feed him and then to bathe him, plus, as he says, he used to have to wake up every day at that time.)
-- They slowed down how long it takes the food to get in him to try to avoid his nausea. (That's fixable on Monday, because his nausea is medication related, not food, so it come and goes with or without food. It does annoy him, because he has to be up to 30 degrees to be fed, but I was with him for an hour with him being at 38 degrees and it didn't bother him. The oxycodone does -- makes him feel out of it -- but the pain doesn't, so I'm good with that, until he gets moving out of the bed on his own.)

Sound like big complaints? Pfffft. Not at all. Pee-diddle stuff! Even the 7th best hospital in the country's ICU had this kind of minor things, and they wouldn't even bother John if they hadn't botched yesterday so badly it was as bad as they could make it for his parting gift.

We found out he was going about 10-10:30ish. They were going to pick him up at 11:30, but that's hospital time, so to the rest of the world that's anywhere between 1 PM and 8 PM. (I have it firmly planted in my head that, although the clocks in a hospital have the same time as anywhere outside, hospitals are event-horizons where time slows down incredible. Not once has five minutes been five minutes, this morning been this morning, and on occasion, today is tomorrow.) The same woman who told him he was going (social worker) said, before she left his room from that conversation, "Oh, and I have to tell them to clean your wound before you go."

11:30 she returned to tell him it's all set, and repeated the thing about the wound.

1:30 the ambulance is waiting for him at the front door and THEN they decide to clean the wound. It HURTS! The only way it is bearable is if they give him morphine before they start. No time. (But that's okay, because they apologized to him whenever he yelped in pain.) Whole thing done before he went. He says he'd rather have it afterward because it's short-acting. Didn't happen. AND, because they didn't have much notice, (and mind you his Palliative Nurse -- the woman there specifically to get him through this "tremendous physical trauma he has endured" -- told him he can't go because they have a meeting a month ahead of time to vote in patients and already voted to turn him down), they could not administer any drugs until his intake, a doctor's visit, and he was set up in the system, so he didn't get anything for the pain for four hours. The VA's parting gift.

BUT, everyone here is super nice and super helpful. (I'm 59, so "super" isn't a go-to word for me. lol) His nurses are telling him things like, "If you don't want a nurse helping you, tell your doctor or the nurse admin and that person won't work with you ever again. (Won't get fired, but just won't work with you. It happens. Sometimes people just don't get along with others.)" "If someone visits you and you don't want that visitor, tell us and you never get that person visiting again. (One guy's wife came in only on weekends and only to verbally abuse him, so she was outed forever. We have cops at our main desk.)" and "Oh, you have a wound vac. I remember the first time I saw one. Didn't know what it is, but the guy had his wound so far down and so big, I could see his hip bone. It takes a long time to heal, but six months later it was, thanks to that. And so healed, he didn't need surgery. We were expecting a dent. No dent. Just a smooth scar along his hip. Neat and tight. I've had many patients with them since. They're great. But the drain is in the wrong place, so we'll fix that." (The final part of his parting gift from the VA?)

Better yet, one nurse told John his name. Lots of nurses have told John their names. (By now, I'm thinking he has had 200 nurses somewhere along the line, and I'm not exaggerating. I think I'm lowballing it by maybe 100-200 more.) But this one asked him what his name was a minute later. John paused, but remembered. And every time the nurse came in again, he'd ask, "What's my name?"

John now remembers two nurses' names already.

One nurse came in wearing a sweatshirt with the word "Weird" on it in an unusual way. (I won't tell how, because of the story. I don't want anyone stealing the idea, and this site is open to the Net, so that's why I fear someone might steal it.) I laughed and told her I loved it. Her story is her 13 year old daughter was being bullied at school. Students calling her weird. So she went home, made the sweatshirt and sold it to her bullies! lol

I'm buying one!!! (I've always considered myself weird, and nice that the word is high enough that it will show over my bibfronts. lol)

Last night, his doctor called to introduce herself. Plus she had questions, (somehow John's charts say he had bypass surgery in the mid 1990's and he had a stroke. Nope. Neither happened. First way we found out something was wrong with his heart was his massive heart attack), plus wanted to answer my questions. She wanted to do this before the weekend, yet gave me her phone number. (I couldn't even talk to his doctors in the VA, once more know their names or phone numbers.) She's off on the weekend, but did this. Then my doorbell rang, because I finally ordered dinner in. Not a problem. I asked for her to call me in three minutes, (didn't have time to get the number before the doorbell rang), and she did. Whoa!

She told me the real scoop on that famous speech therapist from the hospital. Yes, she does work for both the hospital and the nursing home, BUT the last time the doctor called, the voice mail message was a different woman's voice and name. She thinks there's a new speech therapist or there are two, but hasn't talked to her yet, so doesn't know. (Far cry from "she's coming soon" when no one knew if she was coming, and, sure enough, she never came.)

We finished the conversation, (where I got all my questions either answered or a firm, "I don't know, but I'll check into that on Monday"), and about 7:45 PM, she called and start with, "I bet you're tired of talking to me."

I answered, "No, but I think you have a strange concept of 'off for the weekend.'"

That kind of nice people. So, if the worse thing I can say about a place is no handle on the inside of a door hubby can't close anyway, it's a good place!

I feel like I was blown up like a balloon ready to burst, and then let go, only to finally land on a nice soft spot.

"He leads me to green pastures."

Don't think I'm lulled by this though. No therapy on weekend, so I suspect, just like David's pastures, this one is still in the middle of the wilderness. John is no longer a patient in a hospital. He is learning how to walk and move again in rehab. This is going to hurt in all new ways.

Depleted · Mar 5, 2016

Miri said:

Amen...

Hi Lynn, just a thought maybe when you speak to the various staff
you could ask them to put down their comments in writing. Say it's so
that you dont forget. Then when one contradicts the other you can
ask them to explain.

Or there again maybe it would be better to leave it all to God to work out.
Maybe the staff themselves don't realise the left hand does not seem to know
what the right hand is doing.

I'm still hoping this staff isn't that staff. lol

Depleted · Mar 5, 2016

Oh, forgot. He isn't in the hospital anymore, so he's supposed to wear clothes. (They already resolved the tube issues he had.) He's lost 92 pounds and cannot sit up! How in the world am I supposed to get him clothes that don't fall off?

He gave me a pair of sweatpants when he outgrew them. They're ready to go. He gave me a sweatshirt that got too small, but I wore it today. (Too big on me, but I'm behind on laundry.) He tells me not to worry, because they asked for baggy. "Baggy?" He'll fall out of his old clothes! lol

The clothes he gave me I couldn't wear or only wear when I run out of other clothes, so their tags don't tell anything anymore.

I'd go to Goodwill to get him therapy clothes, but what size? Absolutely no idea other than Not-3X-or-4X anymore.

(And, am I washing his clothes again? Really hard to keep up on his wash when he has enough to wear for one day. LOL)

This too is relief. This is funny. For the guy who has nothing, how do I get him something to wear? lol

Pilkington · Mar 5, 2016

Praise God, I am so glad John is now in rehab, It sounds like there are some good doctors and nurses. I am praying that they will fight John's corner. It may not be a bad thing not having rehab at the weekend there may well still be things he can work on. I so hope they have a new speach therapist who will get the food issue sorted. Also I think it is very positive he is going to wear his own clothes and yes that does mean more washing!!!

Through my husbands health issues are have met some lousy doctors and amazing doctors. I could have cried when my husband's cardiologist said she would want my husband to have the same care as she would want for her own brother it ment the world to us. Then there are doctors who wrote him off and thought he would be dead for over a year now. I have also met some amazing doctors and consultants through my training so far and would want them to be looking after my care.

Miri · Mar 6, 2016

Oh Lyn, praise God he works all things out perfectly.

I know wot you mean about the clothes, my aunt lost 2 stone and
not much fit her. We still have some of her older clothes from a few
years ago that do.

Will you have to keep going back and forward with clean laundry?
I did when my aunt was in a rehab place over the summer last year following
another illness. They did say that if I sewed name tags on everything then
my aunt's clothes could go in their laundry, but to be honest I did not
have time to do this and things still go missing anyway. So I took
my aunt's laundry back and forth during visits.

Depleted · Mar 7, 2016

So he's ambulanced over to the rehab Friday afternoon, meaning they scramble to get in all his info before the weekend, and nothing happens until Monday. (Not counting someone clipped one of his fingernails, tiny little knick and he bled like a stuck pig for 9 hours, going through three facecloths, two towels, a box of bandages. Blood thinners!)

And his new doctor tells me the speech therapist is coming today to do his swallow test at 11 AM.

I'm there from 10:30-12:30. Noper. Never showed up. She called. And decided he couldn't sit up long enough to do the test. Hasn't seen him in four weeks, but this is what his doctor at the hospital told her. "He can't sit up long enough."

AND YET, at the rehab they've decided he should sit up between 80-90 degrees to be fed thorugh his stomach, and, because he's nauseous they slowed down the feeding from 1 hour to 2.5 hours. Oh, and he's fed every FOUR hours, so he gets a little time off before put through the torture again. This is sheer torture to him. The only saving grace is some nurses don't know that reg so he can suffer through a mere 30-45 degrees whatever any given nurse feels like she wants him to do.

I am so tired of being told that he can't eat because of aspiration AFTER being told the speech therapist didn't see him! HE'S BEEN SWALLOWING SINCE JANUARY 15TH! He's got swallowing down! He can even swallow at 20 degrees.

Same game, different joint.

Pilkington · Mar 7, 2016

I am angry on your behalf. The speach therapists seems a law onto her self and should have come and made a proper assessment rather than going on what the doctor said also if he is being feed at 80-90 degrees in rehab at least some of the time and for 2 1/2 hours I am sure she could do the test.

I will continue to pray that the speach therapist gets off her behind and does the assessment and agrees to John being allowed to eat.

Depleted · Mar 8, 2016

Pilkington said:

I am angry on your behalf. The speach therapists seems a law onto her self and should have come and made a proper assessment rather than going on what the doctor said also if he is being feed at 80-90 degrees in rehab at least some of the time and for 2 1/2 hours I am sure she could do the test.

I will continue to pray that the speach therapist gets off her behind and does the assessment and agrees to John being allowed to eat.

I'm in the midst of hiring one.

Ariel82 · Mar 8, 2016

Don't be angry at the whole place because one employee doesn't want to do their job.

Depleted · Mar 8, 2016

Ariel82 said:

I'm angry for two reasons, and I'm not even angry at the therapist herself.

When you go to a doctor's office you wait first, right? How would you feel if you started waiting before 11 AM and at 5 PM you found out the doctor won't see you -- but not from the doctor. After someone else checked to see what's going on? John found out she didn't come after I talked to his doctor at 5 PM, and then I told him. He spent the day waiting for her to come (again.)

I see the speech therapist's problem, and honestly? I'd probably do exactly what she did. She works two days a week. Half a day at the nursing home/rehab and half a day at the hospital two days a week. She's responsible for every patient who needs a speech therapist in that allotted time. So she triages -- sees the emergencies first and works her way down the list. Hubby was an emergency the first time, simply because he couldn't be taken out of ICU until he was no longer incubated. The only way for that to happen is see a speech therapist, so she went.

He's on a feeding tube. He can live the rest of his life on that feeding tube. He was also 90-110 pounds overweight, and he's lost 92 pounds so far, but they're judging what he should weigh by charts that say he was 150-170 pounds overweight, so they aren't worried he's STILL losing weight. (He's 6'1" and they say he should weight 161-181. Not ever!) His brother was his same height but a thinner frame. He could go the ideal weight. (180.) Hubby really is big boned, plus he did bodybuilding when he was young, so his skeletal structure expanded to accommodate the massive muscles back then. Bones don't invert later. After bodybuilding, he took up distance running and his body morphed to a runner's body with a weightlifter's strength. (At one point he lifted himself onto an I-beam 8 feet above the ground by jumping up to reach it and then pulling himself up with just one hand. He had the physique of an action figure from the 80's -- more Bruce Willis/Will Smith than Arnold Schwarzenegger, although he had Schwarzenegger's muscles before taking up running.) BUT he was so thin, everyone asked what long-term illness he had. At that time his rib cage/chest/suit jacket was 54 inches. Not from fat. From enlarged frame and muscles. His cruising weight -- the weight he should be for his real size is 18 pounds less than he is now or 2 pounds more. (220-240.) They want him to lose another 50-70 pounds, because the BPI says so. (He's 238.)

The BPI also says football players (American or that other game -- soccer) are obese. It is seriously flawed against people with muscles. since muscles weigh more than fat. And, because he lost all muscle, he's returned to his weightlifting mentality and he's exercising again to get out of that bed and come home. There is a tiny muscle on everyone's shoulder that looks like a knot from an injury when it's used. I've never seen mine, because I've never exercised to see it. His is back. He has biceps again. (I admit, he hasn't in over a decade because of his CFS.) He can't go down more than 18 more pounds yet some chart says he should go down much more, so him eating isn't a problem for a harried therapist.

I get her reasoning. I'd do the same thing with too much work for one person. But now the doctor wants him to get a CT scan of his head to check his neck/swallower. (His neck isn't on his head, just for the record. lol) Anything to postpone him eating, but make them look like they're doing a job.

I know enough about this to know it will take a long time for him to go back to eating, even after he's approved to eat. He's already lost interest in food. He can get to the point where all food taste terrible always. The speech therapist has too much to do. His doctor has the same problem. He's not an emergency. BUT he is my husband, so he is.

Since there is no second opinion from the two institutions he's connected to, I can get one. I can afford it simply because it's cheaper to buy food for one person than two. The money spent each month to pay for the second person to eat (hubby) can go to pay for a speech therapist to get that second opinion.

He has not eaten in a third of a year -- 113 days! He's lost 92 pounds, so that's roughly a little less than a pound a day!

Pilkington · Mar 8, 2016

What size hospital is the VA and the VA rehab. It is just wrong there is only one part time speach therapist between the two hospitals. This is management decisions probably made on the basis of finance but in reality will cost more in patient care than it would in employing a resonable number of speach therapists.

Short sited bad decisions are made by hospitals all the time. I would be tempted to try and bill the hospital for the costs you incure.

Pilkington · Mar 8, 2016

People need to see an individual not an illness or the condition, when that happens they are able to see the rules such as wt do not always apply.

Depleted · Mar 9, 2016

I've learned that his doctors don't know what's going on because all they do is read his chart/folder/really thick book for answers. His new nurse knows the real story, so I hope never to go to his doctor for answers anymore.

His nurse (Raphael) told us the truth of what really happened. (Previous version was what his doctor told me, and I believed her.) The procedure is a swallow test is giving a patient a little bit of applesauce. If the patient swallows that properly, he passes the test. John didn't. (And that was a month ago.)

If the patient doesn't pass that test, later on, he has to take a test with an X Ray machine at his throat while swallowing. You just can't stick that Xray machine anywhere, it's not the portable kind, so the patient has to go to that clinic/lab to have it done and has to sit on their chair. Their chair has no padding and the test takes between 1 -1.5 hours to do. John has a raw hole of a wound on his tush that passes through all that tissue that defines the gluteus maximus clear into his bone. The only thing between that wound and the chair is a wound vac, bandages hold it there, and bandages covering that up to protect him from all the bacteria and germs that can get into it simply because of its location and his inability to get off it. Alo he has to stay still for that test.

He cannot. Raphael says he will schedule it the moment John can withstand it.

The pain is excruciating unless he gets his pain meds. I actually tried to talk him out of suing HUP for this damage. Not because I don't think HUP deserves it, but because I don't want the rest of our lives spent on all the emotions of the lawsuit with just a 50/50 if we'll win. John wants to sue them anyway. Can't say I blame him. Part of me wants to too.

He won't be eating for a few more months because of a very large PIA!

blue_ladybug · Mar 9, 2016

wow.. this is complete incompetence. My dad had a massive heart attack years ago, and never went through all the rigamarole they're putting John through. Time to talk to a lawyer.

Depleted · Mar 9, 2016

blue_ladybug said:

John wasn't a "typical" massive heart attack. He was/is the example of complications. He had stents put in, but he was so unstable then, they didn't dare check him for what happened to his heart. Then he got pneumonia, then his kidneys shut down for a couple of days, then another infection, and finally they found out what happened during the heart attack -- he blew out the microvalve and the tissue that connects it to the heart. 32 days to recover enough to have open-heart surgery. And then there is an older person loses 10% mobility every day they cannot move. The incompetency wasn't in treating the patient. It was in taking care of him during that time.

Miri · Mar 9, 2016

I'm so sorry Lynns that you have to keep dealing with these messes.
Praying that everything will come together for you and John and that
you will both have the strength and stamina to go forward, that you
wouldnt be depleted.

Depleted · Mar 9, 2016

Big prayers for John. He told me there are only two reasons he hasn't just given up and killed himself:
1. Me. He doesn't want to do that to me.
2. He literally can't. No way of doing that when stuck in bed.

The pain is unrelenting. Before it's gone up to 8. Eight is the magic number where medical staff does everything in their power to lessen it. He's at 10!

The best I could give him when he said he wanted to die except for causing me pain was, "Good. Because you were the only reason I didn't kill myself back when I was in that much pain, and now I know it got better. Yours will too, although I have no way of knowing how long."

He asked and I have. I just made the call to a lawyer to sue that hospital. (And left a message on their voice mail. They were our disability lawyers. I don't know what type of lawyer you get for hospital incompetence, so I'm hoping they will and they can point me in the right direction.)

Pilkington · Mar 9, 2016

I am continueing to pray for you and your husband Lynn. I am praying particularly that the pain would lesson. I am glad the nurse was completely honest about what happened. I pray that you will get the write advice on whether sueing is the right course of action. Sometimes sueing is the only way to get things to change. Also sueing can help you keep going when your back is against the wall as it gives you something to fight for. However it is worht bearing in mind sometimes things go wrong however careful everyone is.

NEED PRAYER NOW

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