NEED PRAYER NOW

Yesterday was both the best day so far and a day that will haunt me for a long time.

John can't sit up on his own yet, so to get him out of bed, they need a lift.

(except he's bigger, not so well dressed, and can't hold himself up like that sideways. lol)

So his PT and OT got him out and to the physical therapy room. (I like "gym" better.) Thankfully, I sat behind him. Thankfully, because he stood, and I could tell by the expression on everyone helping him's faces and the way they all stood around him, he did most of the standing himself. He really STOOD! A full five seconds! He told me he thought he'd never do that again before, so tears streamed down my face.

And then, he did it again.

He also did other exercises because chairs cause excruciating pain, and, not only are the exercises good to get his arms strong enough to walk those parallel bars, but they devert his mind from the pain of the chair.

And then he went back to his room, and the PT told him he has to sit there for the remainder of the hour. And, she's been having this fight with John's nurses, because they keep saying they don't know how to use the lift, but it's basic nursing training, so they ought to. But she was going to lunch, so she was forcing their hand.

25 minutes before John would return to his bed, he was beside himself in pain. (I'm busy trying to divert his mind, but, let's face it, me talking just isn't that exciting.) 5 minutes left and we already had it figured out it takes 5 minutes to get him ready, so I go out to ask the nurses to start getting him in bed. I get one of those, "I will when I'm ready looks."

They come in after 5 minutes -- four of them and they heard about this lift thingy, didn't realize there was one in the room, one of them has done it before, but not with that sling, which is new because of some useless regulation just put in place about bedsores, (I tell him he IS the reason for that regulation), blahblahblah.

15 minutes later, John is dangling with the only thing stopping him from having his knees IN his chest is the foley bottle and the poop bag! They're between his face and legs and he's squished so tightly, I hurt! But I wouldn't say anything for fear these nurses would stop to discuss it with me.

20 minutes to get him from the chair to the bed, and another half an hour cleaning him up because the other end of one of those tubes left spraying it all around him. (And, no, not the catheter.) Oh, and the nurse forgot his gown, so guess who lived with the full monty while nurses stared at him for no particular reason other then to spend tie mentally ticking off their "did I miss anything" list.

His PT stop by a minute later and I burst out crying when I begged her never to put him through that again.

She won't, but she is worried this sets a precedence. I know it does, but he's my husband!

Really hard to believe God's just not messing with us.

Praise God he was able to stand.

I can not believe the nurses said they didn't know how to use a hoist. Before I could go on placement as a Physician Associate in UK I had to do manual handle training which included moving patients with hoists and moving patients aren't part of our role (if needed I would move a patient). We also as do all hospital staff have to manual handling training every year, it has to be done within our working hours.

I think there are hoists of different sizes, if he was hunched up bent almost
double then either the hoist (the material part) was the wrong size or not used
correctly.

Did he actually need a hoist! If he can stand for 5 seconds he could probably
sit on the edge of the bed. This is what my aunt did, then they used slide sheets
to ease her into bed, it only took a matter of seconds. It might be worth askig the
staff.

Good to hear John was able to stand - small steps

If they can't do that, what else can't they do it doesn't exactly fill you with confidence. We were taught that normally you should have two people to use hoists. We had to hoist each other!!! Yes and we had to work out the right size of sling and make sure it wasn't too small. Make sure they don't leave John in the sling when sitting in a chair or wheel chair. We were also taught about maintaining the dignity of the patient at all times.

Flying spiders, creepy crawlies! You will have to read my latest post on the adversity
thread - I loved creepy crawlies as a child!

Oh did you l know all spiders are called Harry. Harry the spider, at least they are
in my house.

There's a third choice -- intentional incompetence. (Flying spiders.)

And he can't use a bedpan yet, so hoses (they call them tubes, but too big) are used, so him sliding around is hampered.

Because hs bottom is so sore, but he needs the chair to stand and sit, they're now giving him morphine first. (It makes him nauseous, and I keep telling him they have enough different pain meds that he doesn't have to settle, but he won't let me tell them he's sick, so....) Remember his blood pressure was too low, (probably because of a bleeder), so when he sat up, he got dizzy? I've seen the numbers. It used to be his high number was as low as his low number used to be high (around 70-97 for the high number. Much lower for the low number.) He used to take four high blood pressure medications just to keep him at above normal for most folks. (130/90 was great.) Now we get excited when the high number hits three digits and the low number is above 60. (Got really excited yesterday because it was 110/70 -- PERFECT!)

But there are two side effects to the morphine:
1. It makes him dizzier.
2. It lowers his blood pressure.

So, he was too dizzy to stand. (Nauseous too. I can pick out that face from the pain-grimace face. I saw both today.) But because of that, the therapists are going to change his meds. (Yay! Didn't have to tell.)

AND, the thing I wanted to happen has happened. I wanted him in the VA for the rehab part of getting better, because I knew the patients would be his kind of people -- a sense of humor, a bit of a smart-alex/sarcastic streak, (what? You thought only I had that? ), and the comradery to both encourage and push each other. He's getting that too. And honestly. I now know it might well take longer than I imagined, yet again. (I might have to go to him for Christmas again this year. But at least he'll remember it this time. He remembers very little of the other hospital. Not even me -- which I'm fine with, considering he would have hurted more there than he does now, and this hurt rates an 8 and tears.) I got that from two different guys who thought it would be quicker for themselves, but are happy they can walk at all.

Morphine is great for pain control but boy does it have side effects. It also depresses respiration and causes constipation.

They can't figure out if he's allowed to have ice chips, if they should feed him ice chips with their fingers, if he's allowed to have water, (and all that is on a memo on his door, so even I can figure that one out), how to clean out his feeding tube before feeding him, or if they should, how to get the plug off his feeding tube, (he teaches them), how to insert the tube the food passes through, (he teaches them) how to change the bandage on his trach hole, (he teaches them that too, but they're afraid they'll mess up, so they don't, or they're afraid he doesn't know any better than they do, so they gag him by shoving too many pads into too small an area), if or how to change the bandages on his tush when his poop tube comes out, if it's the receptionist, his nurse, or someone else that should deliver my letters to his doctors, (they've elected John to the task, completely not catching on that I'm complaining because he never sees his doctors and is stuck not getting his own stuff because they leave it too far away for him to reach), if they should even tell me who his doctor is, if they should wash him, how to wash his hair or if it ever needs washing,... the list of what they don't know keeps growing.

One thing they all do know though -- never clean out ears with cotton swabs. He has waxy build up, plus he's hard of hearing, so I've been trying to get someone to clean out his ears for 14 weeks. No can do, nor was I allowed to use cotton swabs. So, last Saturday, I brought in his ear cleaning supplies and he cleaned them. The next day, he needed to clean out one of the ears better, so I pulled out the cotton swabs. He got caught, so I gave the other side of the story to that nurse. Tomorrow I bring in the supplies to clean a sensitive area no nurse has thought should be cleaned since he's been in the hospital. I have no idea if the other hospital ever cleaned that area, so he might be headed to 16 weeks of one intimate part of him never being cleaned.

I'm not kidding. They really are incompetent -- on purpose. This is a veteran's hospital, so it is run by our government. And this is exactly why Americans are against government-sponsored and administered healthcare.

Maybe God is calling you to speak up for the patients and their rights in this hospital. I remember you mention having a communication degree. Perhaps and article or letter to the person in charge might get those nurses in a retraining class on how to use a lift.

From the sound of it, they might be taking steps so that other patients don't develop stage 4 bedsores....the hospital should have treated it early and the nurses should turn him every 2 hours...otherwise that is neglect and will take longer for him to heal.

Praise God that he was able to stand for a little while. Perhaps he will be able to do that weekly, than daily.

However, I think it was too much to have him sit in the wheelchair for 1 hour after. Especially when he hasn't been sitting in bed, prior.

Does your church have an advocate or someone to counsel you about your legal rights and make sure that the nursing staff knows there are consequences for not doing their jobs?

Personally I think it would have been better for the physical therapist to supervise his transfer back to bed and elevated the bed to a sitting position and then when it got to be painful, lower it to 30 degrees.

Hopefully you won't give up on having him work on sitting in the chair and standing because of the nurses lack. Perhaps that new head nurse can teach them or have them taught how to do it.

Will keep you both in prayer.

May God bless you and guide you, so that your words and actions reflect His glory and love.

His pain is in his hips and bedsore. 30 degrees is painful, but even so, he has to be at 30 degrees to get fed and to have water and/or ice chips. The only way for him to get better physically is to endure that pain. What fixes the hip pain is standing and walking. I'm not sure if he ever gets his bedsore past the point of pain, because they promised him a wound vac and lied about that too. So, he's doing exactly what he shouldn't do, because he has no choice. Turning him causes more pain. No one is turning him unless it's his PT. The nurses are aware he should be turned, but... well? After the lift debacle I'm not going to force the issue, and I don't have the heart to cause him unrelenting pain.

I've been telling the problems. I know what's needed. What's needed can't/won't be done.

Newspapers, tv station? Neglect shouldn't go unchallenged. With a stage 4 bedsore and then not turning him probably and helping him be reintroduced to food, it sounds like a strong case for medical incompetence and neglect.

They shouldn't force him out until his bedside is healed and he can feed and go to the bathroom himself.

Perhaps you can find a pro bono lawyer who will take your case?

Finally, hopeful news. We live on 16th St. All north-south (semi- or fully) major streets in Philadelphia are numbered, (except for Broad St., which ought to have been called "14th St.") Each numbered street is exactly 1/8th of a mile from the next numbered street, so 8 of them is one mile. Between 4th and 5th, two blocks north of us (thus 1/4th of a mile north of us, and obviously 12-13 blocks east) is a rehab on the preapproved Medicare list. We've gone to flea markets in its recreation field right below it. We used to live on 13th St. in the same block it's on. It IS our neighborhood.

It's also Catholic, so didn't come to mind as an "ooo-ooo exciting" choice, but one thing Catholics have that most denominations don't have is a willingness not to get put off dealing with someone outside of their denomination. I called them. First question: "How much?"
"Insurance will pay for it."
"We have Medicare, so then how much?"
(A little exasperation in her voice, but I like that.) "Insurance will pay for it."



"Do you except patients with MRSA."
(A little duh-now in her voice, and I like that too. Her attitude is proper SOP in South Philly, so when they don't do that, I get nervous.) "Of course."
"I have three days to chose a place, so when can I come to check it out?"
"Whenever you want."
<----me. Pert-near happy, but not outrageously happy, until I check it out and find it's good.

If'n this is THE place, please feel free to Jethro Gibbs head-slap me for not trusting God enough yet again.
[video=youtube;LCsGCpeoOJ0]https://www.youtube.com/watch?v=LCsGCpeoOJ0[/video]

Love the bunny. Keeping you and your husband and whole neighborhood in my prayers.

God bless and keep you.

Please read my last three posts before reading this one, or you won't get why I'm whirling in confusion. John's going to that VA rehab across the street later today -- the one that supposedly decided he can't go to, the one his PT said he doesn't want to go to, and the one everyone said isn't going to happen.

Why? Because he will be taken care of for free for the next 90 days, so by then, he'll be improved enough to come closer to home, to another rehab, which means it won't cost us as much money. They don't rehab on weekends, however in 90 days, he should be sitting, standing, and maybe even up to getting in and out of his wheelchair. He better be eating by then too. lol

It will take longer this way, but John's okay with that because we won't go broke getting him home quicker.

And no idea how this affects when he can eat again. I don't know if this delays or speeds up that process. Of course, the last time doctors hemmed and hawed because he was being transferred, they ultimately decided to do nothing with his vent but the bare-minimum, and when he was transferred, he had a trach in a mere two days, so I'm thinking the hemming and hawing is directly related to "we don't want to deal with this, so let the next guys." And then the next guys react with "why wasn't this dealt with" so they get rid of the extra stuff. The resident (aka lapdog for his doctor, but a new guy in the last three days so I know more about how this works than he does -- and not sarcastic. Yesterday I was explaining to the residents that the speech therapist is part time and is only there Thursday afternoons and one other afternoon, because they didn't know that lol) tells me it's a different speech therapist over there, but someone along the line told me she works for both.

Some things most rehabs seem to supply -- dentist, (even for dentures), and haircuts. A mere 16 weeks later, and I may not have to be the one who cuts his hair with a vacuum cleaner. lol

Has anyone caught on that I could have gotten my chair tomorrow had I known how this would work out?

Gibbs slap time?

I wish I knew and could teach you how to reintroduce your husband to food. The made thing is it is covered by speach therapists. When my Hubby goes to see the respiratory consultant he sees a speach therapist aswell as Beckers Muscular Dystrophy can effect swallowing. There are numerous muscles and nerves in the face, and mouth involved in swallowing. The speach therapists need to check that he can swallow safely. Bad though it would be to aspirate water into the lungs, food would be far worse as it would sit and rot. They will look at the swallow reflex, may thicken liquids, stodgy tea or coffee, puried food etc, soft food, slightly lumpy food, normal food. They may teach techniques like turning the head to the side when swallowing as it can help protect the airway. This is basically what I have seen being done with stroke patients.

I am going to continue praying, I can see how nightmarish this all must be. I am so glad they have the vacumn dressing it should help healing, if that doesn't work then the chances are he will need it rebuilt with surgery. We have been studying about ICU care and sometimes even with the best care possible Ulcers occur and yes they can be as bad as grade 4 ulcers. I think there is always a lot of passing the buck and no one wanting to take responsibillity. When John has recovered if you have the strength it may be worth writing to the director of the hospital about all the things that were done wrongly etc. Sometimes if someone speaks out or enough people speak out changes happen.