NEED PRAYER NOW

[Depleted]

Wow Lyn, I think I would be tempted to write out a list of things
which need doing, write it in big letters and stick it over John's bed.

Then also write on it the date it was observed and the number of days
it took to get it done or still not done etc.

If anyone says anything, just say it's your way of keeping track of
what people tell you and John.

I wrote a letter to the unit doctor reminding her John has rights as a patient. Big reaction. Nothing changed. Now she's gone, so all I have to do is find out who replaces her and ruin that doctor's first day. lol

 

[Depleted]

Wow..any way you can change hospitals?

Will pray.

Nope. (On the changing hospitals. YES on the praying. lol)

 

[Depleted]

An idea just came to mind. Whenever I am going through a very stressful time in life. I surround myself with encouraging Bible verses. I was a poor college student when I started it. So I would write them on post it notes and index cards. Then tape it all round my apartment.
Like in the fridge, in the bathroom mirror,behind cabinet doors, etc,

That way no matter where I was at home I would have something to remind me of God's love and peace.

Perhaps it would help to surround his hospital room with scripture or play some gospel or something.

Just a thought.

I tried that originally, but he didn't open his eyes for a couple of weeks. And then when he did, later on I found out he wasn't fully awake anyway. (No memories of much in that hospital.) Now he can both remember and see, except he's too tired/weak/sick to have the energy to read.

 

[Depleted]

I apologize if I step out of bounds but the more I think about it, the master it makes me.....

He is bleeding internally because of a spring he swallowed from a feeding tube the hospital,placed inside,of him?

That and the other stories point to gross negligence.

A hospital oversight committee needs to look into what is going on.

The nurse should have changed the bandage, but instead she let the night nurse do it. That is just laziness and incompetence.

I hope and pray the new head unit nurse is better.

If not I would contact a lawyer because they should be allowed to do that to you and other families seeking help.

Probably 95% of the people there really care and want to help, but it's the mistakes and laziness of the 5% that can cause a lot of harm.

Most hospitals catch and fire those folks.

Praying that God will,move in the hearts and minds of those around you.

Nope again. They fond the spring, but he wasn't bleeding because of it. It happens occasionally, and usually the spring just leaves the system. He probably would never had known if he didn't have the colonoscopy while it was still in him.

 

[happyface]

Hi Lynn, are you OK, just a quick message to send my regards and love. Everyday we are learning, my wishes are to you, and know that your definitely not alone, love Mandy xx hugs

 

[Depleted]

Hi Lynn, are you OK, just a quick message to send my regards and love. Everyday we are learning, my wishes are to you, and know that your definitely not alone, love Mandy xx hugs

Exhausted yesterday, so went to bed early and got up early. My plan is to be there when doctors come for rounds to meet new doctor. As has been shown, my plans rarely work out, however, snow is coming later today, plus fires to fight at home too, so I'll be going soon. (It's 7:45 AM here, so our timing is different. lol)

 

[Depleted]

Just an update -- even if they can't find the bleeder, he is bleeding less and less, so it looks like it's healing. They say the reason he has lost so much ground is because he doesn't sit up enough to keep his blood pressure high enough to gain more strength. On the other hand, him sitting hurts his hips and bedsore enough that it is very painful for him to even stay up at 20 degrees in the bed. (He should be at least 46 degrees to get minimum benefits of sitting.)

Also, a possible infection in his urinary tract, since his urine was pink today.

So prayers that he can handle both -- the sitting and the pain. (Also prayers that they are right.)

 

[happyface]

Just an update -- even if they can't find the bleeder, he is bleeding less and less, so it looks like it's healing. They say the reason he has lost so much ground is because he doesn't sit up enough to keep his blood pressure high enough to gain more strength. On the other hand, him sitting hurts his hips and bedsore enough that it is very painful for him to even stay up at 20 degrees in the bed. (He should be at least 46 degrees to get minimum benefits of sitting.)

Also, a possible infection in his urinary tract, since his urine was pink today.

So prayers that he can handle both -- the sitting and the pain. (Also prayers that they are right.)

Hi Lynn,you have been through so much, I pray in John's best interest and keep praying until he is well, love Mandy xx

 

[Pilkington]

Hmmm, there are number of reasons for pink urine, not just infection. Could be certain meds. But to me pink urine tends to suggest blood. Hope they checked for haematuria (blood), also protein. Blood and protein are sign of urinary infection.

 

[Depleted]

Update: The big goal yesterday was take him down to IR (something Radiation, although he's not being radiated) to make his feed tube right. It was broken. Just in case they had to do surgery, they stopped feeding him with the tube and stopped him from having any ice at midnight.

He went down at 9 AM. They fixed it while he was still awake and he returned at 10 AM. His doctor stopped by and John asked if he can have ice. Doctor went through the whole, "I know it's tough when your thirsty, but" blahblahblahblah (basically repeating the last thing the speech therapist told him back in January about aspirating, although she start letting him have all the ice and water he wanted on January 15th) "so, I will get you ice. And will get you feeding again soon."

He called me before and after the procedure, so I got there at 11. No ice chips yet, and his nurse said he was restricted. Who told her that? "The doctor."

I told John I was fine just getting him some ice, but he didn't want to get the nurse in trouble. 11:30 and he's dying for ice chips. (No eating or anything but ice chips since November 21st, so ice chips is his life now.) I told him I'd get him some, but he didn't want to get the nurse in trouble. He did, finally, let me go ask for a phone call from the doctor by then, but word came back that the doctor was gone until 2 PM. I wasn't leaving until he got the ice chips.

One o'clock I see the doctor go by. If someone goes by in that direction, they have to go by to return again, so I waited. 1:15 and he went by again. I chased him down the hall.

He gave me the same false-sympathy spiel, and told me he was checking into it, but had to talk to John's nurse. I told him the nurse said she got her orders from him. The lap dog (an Intern always attached to the Unit doctor's side) told e they were waiting to find out what the speech therapist said. I told them the note from her has been on his door since January 15th. He can have all the ice chips he wants, right down to he had a trach back then and now he doesn't. More handling with that sympathy speil, (I had trouble not rolling my eyes), and they'd get "right to it."

I walked back into John's room and asked him if he wanted me to get him some ice. By now, he did. So I went to the ice machine and got him the last cup filled with chips and then filled it with water from the bathroom sink. Then I pulled the curtain near the door, since he can watch the nurse's station from his bed. He quickly drank the water and wanted a refill. Got it!

Lap dog is talking to his nurse and then leaves. The nurse is still talking to her coworkers.

I'm in great pain by now and needed to go out for a smoke. (He still needed his feed bag,so I couldn't leave yet.)

When I came back up the curtain was back where it belonged. I asked, "Caught?"

He smiled and showed me his hand farthest from the door. The empty cup was hidden from the nurse, but she had just come in, 20 minutes later to tell him she was getting him some ice chips and then would feed him. Ice chips came as I was pulling the chair back to his bed. Feed bag came 15 minutes later.

All this just t give him what he already was given freely 32 days ago!

Before I left, I told him IF the speech therapist shows up, (which they've been claiming she'll do today for the last week), and she doesn't approve him to at least drink something other than water or give him real food, to have her call me. The doctors and lap dogs have been telling him he can't drink anything except water because he might aspirate into his lungs. He's been scking on ice chips and drinking water since January 14th. He hasn't had pneumonia yet, so he is NOT aspirating. This is three people laying that excuse on the shoulders of anyone who never shows up, like the speech therapist!

94 days later! It's time to EAT!

​Meanwhile, My ribs are killing me all because no one, not even the doctor in charge of the unit, wanted to decide if John could eat!

 

[Ariel82]

Sounds like they are scared with the whole feeding tube mess up. Praying they get it together and do what needs to be done to help his body use his God given ability to heal itself.

 

[Depleted]

John called me at 10 AM to tell me they were taking him down for a CT scan, so don't come yet. He had no idea why. I've had CT scans. They don't take too long, so I figured he'd be back in an hour and I got to his room at 11ish. Okay? So I was wrong on the timing. He was still gone. So, while I waited, I did a quick handwritten note to his doctor that told him that John was coming up to his 100th day of tasting nothing in his mouth, and I wasn't going to let that happen. I'd bring him something to eat before that. BUT, if the speech therapist gave me a very good reason why he can't eat yet, I'd listen. (They've been telling him she was coming "today" every day for over a week now. I got tired of that lie.)

When I looked up after writing it, I saw his doctor walk by, so raced out, handed him the note and went downstairs for something to eat and drink and a smoke.

When I came back, John still wasn't there, but the doctor came in to tell me he'd stop by to talk to both of us when John returned. Since he was there, I also asked what the CT scan was for. Found out, once again, there was discussion if he'd have this same CT Scan as an outpatient later on, despite the fact that it was because he had blood in his urine and because he can't urinate the old-fashioned way. His urologist wanted to check his bladder and kidneys. (Which is when I said, yet again, that he had a cancerous cyst on his kidneys two years ago, and he had a UTI that they couldn't figure out why they couldn't treat effectively for close to a year before all this happened. And that's in his records, since it's the same hospital all that happened in.)

So when John returned at noon and had his cup of ice chips (eeek! A mechanic was fixing the ice maker when I went in the first time, but he fixed it within half an hour, and there was ice available when he left -- whew!), the doctor returned. His bedsore isn't healing in a way that satisfies the bedsore doctor (insert proper name for that specialist if you know it. I simply can't remember all the itles they have), so he would go down to the operating room to get it cleaned out and fixed to heal better. (Didn't quite understand all that, but something is wrong and they were going to fix it. This evening, when I called John to see how he's doing, he said she did it in his room, and what she told him last week was drastically different than what she said this time. That coating that formed when it happened -- not skin, not a scab, but something the body creates to cover an open sore -- won't leave and should have been replaced by his own skin by now. Last week, she told him it was all gone. He was checking with me to make sure he wasn't nuts in thinking she told him that last week. She did. I remember he told me.)

And John's main doctor told us both that the speech therapist -- aka swallower tester -- would really come tomorrow afternoon. He had talked to her, and he would check a couple of times tomorrow to make sure.

(He told John that I was a great advocate for John. Not sure if that was a compliment or a "your wife is annoying," but I don't care. Someone has to. 95 days! That has hit ridiculous!)

Also found out what "sit up" means in degrees on a hospital bed. John has been told 30 degrees is optimal, but I couldn't get him to think past that. He was told 30 degrees for when he is being fed through a tube. I wanted to know how much he has to be sitting up to eat. 85-90 degrees. It's going to hurt incredibly (his hips hate 30 degrees. They despise more than that, but I have to make him understand he has to suck it up, because the only thing that will make his hips better is if he can stand up and walk. I hate telling him he has to suck up severe pain, but I hate he hasn't eaten for so long worse. And that he will never come home if he can't suck up that pain.)

So, my thinking is John hs been sucking in ice chips and drinking water successfully since January 15th. He hasn't choked once, and if he ever aspirated into his lungs, he would have ended up with pneumonia or bronchitis or something like that. He hasn't. (At least he hasn't since early December.) So, although he's not doing well with sitting and hasn't hit standing completely, he really has been exercising his swallower for over a month and as regular a base as they allow him. (Last night, his nurse told him he can't have water with his chips. One nurse actually wanted to hand feed him two small chips at a time, and she'd be back every "five minutes" -- which in nurse code means "every hour or so" -- but he chose be thirsty rather than put up with that. And other nurses play games with how much he drinks and how often. So, although the sign says he's allowed all he wants, the nurses make their own rules.) He's got swallowing down.

BUT please pray he passes that test tomorrow. And please pray I'm there when the woman shows up, because I need a reason I can buy, if she says he can't. Otherwise, I'm sneaking him something tasty to swallow.

Oh, and pray his promised custom-made wheelchair (he's big) shows up before the weekend. It was ordered three weeks ago. I got a call two weeks ago saying they were still waiting for a part. And last week, the PT said the part was in, so it should be here soon. (The place that makes it is 20 minutes from the hospital.) This weekend is supposed to be in the 50's. John can't sit on his own yet, but I'd like to get some help to get him in that chair so we can go outside and enjoy the hospital's garden. He desperately needs to do something different and enjoyable, even if not up to "thrilling."

 

[Miri]

Praying Lynn, did they sort out where the bleeding was coming from.

 

[Depleted]

Praying Lynn, did they sort out where the bleeding was coming from.

They weren't bleeding during the tests, but John has angiodysplasia. (Quick. Write that down because it will be part of the vocabulary quiz on Friday. lol) They're (and, yes, several), basically abnormal, thin-membraned blood vessels in the GI tract that can bleed at any moment. John was told they are common in older people. (I'm beginning to think 69 might be "older.") So they might be the bleeders, but nothing to be done that would make it better, and the same things they can do to make it better could just as easily make it worse.

Any which way, his bleeding is gradually slowing down, so we're hoping it's healing on its own.

 

[Depleted]

And strike this up as another example of God getting me to get patience whether I want it or not!

John's bedsore isn't healing like it's supposed to, (it can't because he can't get off his butt -- literally -- so no circulation there, so the bedsore developed, the pain is sapping his strength to get off his butt, so the circulation is bad...), so they wanted to take him down to the OR and get rid of that covering, then put some kind of device on it to suck up all infection that is under that covering, so he can heal.

Yesterday someone came in to look at it. That's why John and I thought he wasn't getting the surgery. We thought that was it. But, nope. Today he was given a choice -- either surgery to get that sore dealt with or the speech therapist to test if he can eat this afternoon.

Personally? I would have gone with speech therapist. John went with surgery.

Now, they are saying the speech therapist will come tomorrow, but I'm pretty sure I know something they don't know. The day she told John he could have ice chips finally (January 15th, a very good day), she said she only came to the hospital twice a week. It as a Thursday, and today is a Thursday, so that's one day. I don't know what the other day is, but I doubt it's Friday.

His bedsore has been a pain in the butt -- again literally -- for months now. He doesn't remember much of what happened at HUP but he remembers that pain even from HUP. That bad. He'd rather have that healed then eat, and that's saying a lot.

I guess I married my patience. But, there goes my threat on he will eat before his 100th day taste-free.

If that's not enough, his PT was wondering why he doesn't have his wheelchair yet, and asked someone to light the fire to get that done. Well? Right after The Big Snow of 2016, (The storm that dumped 19 inches on us in the end of January), some lady called and left a message on our home phone for John to tell him they were waiting for a part, but he should have it the next week. I didn't save the message, but I wrote down the lady's name and the name of the company, so I decided to do some lighting.

She doesn't have the parts yet. The purchasing agent in the VA is the one responsible for getting those parts. She gave me his number. He got the order February 1, but now that I called he'll "expedite." The company delivering the parts are in California (where it rarely snows. lol) They have to ship it to the people who will put it together, who are in my neck-of-the-woods, Sewell, NJ. (Was born and raised close to there.) When they do that, then it ships to the VA (in Philadelphia.)

Some other lady called me back then too to figure out what John needs to heal at home. (Hospital beds, commodes, instruments to clear out his trach, the whole nine-yards, but she seemed fully unaware he was going to rehab first.) I'm so glad John didn't come home when these two ladies called me. He'd be stuck in the car until the wheelchair came. lol

I lack patience, but God is still working all this out with or without my help.

Now, if he will be even kinder to the guy with the patience. John is very worried his butt will hurt even worse after surgery. 2016! You'd think a bandage with healing medications in it and novocaine ought to be a reality by now! After all, they actually have some kind of infection sucking instrument. (I'm going to dub that machine, "The Brown Noser." I named his EKMO "Nice Dracula," and named the portable X-ray machine "Five-is-Alive." I don't know why John's Occupational Therapist thinks I'm funny.

)

 

[Miri]

Heard of the expression two heads are better than one.
In your case it sounds like one head with a brain would be
better.

I had this (although not as bad) with my aunt with different people not
knowing what was going on and saying different things or making
different arrangements.

Regarding the equipment at home, even though John is in rehab, you
might be better to arrange the delivery of the equipment as soon as
possible. At least it will be in place for when he does go home.
Otherwise you may find he gets delayed longer in rehab than
necessary.

Im not sure how quickly equipment can be delivered to you in your
neck of the woods, but it took 6 weeks to get the promised
hospital bed delivered for my Aunt. I was even given two different
delivery dates before it finally arrived. The Occupational Therapist
kept changing her mind about the type of bed and cancelling the
arrangements at the last minute.

So it might be helpful to make some enquirers as to how long it will
actually take to have the equipment delivered. If it is going to be a
matter of weeks, then you can delay getting it for a while. If it
will be months then you might need to consider getting things
in place while John is still in rehab.

Continuing to pray for you both.

 

[JesusLives]

~
~

Hugs and prayers always....

 

[Pilkington]

I am praying that the bed sore will heal. Bed sores are difficult at the best of times but diabetes make them that much worse and slower to heal. I am wondering if they are using a negative pressure dressing. Certain dressings have been shown to promote healing. There are also therapeutic maggots that can help to remove all dead tissue in a wound, yes I know a bit grim but very effective, the maggots have to be counted in and out.

I would take the Doctors comment of you being a good advocate for your husband as a great complement the Doctor wouldn't have said it if they didn't mean it. I am also praying you get a doctor on side who will fight your corner. I have met a few consultants like that since starting my training. I have also come across a few who I would not want anywhere near me or my love ones. I am praying that God will give you strength to keep fighting for your husband.

When my husband was ill two and half years ago I had to fight for him and that was the part I found most difficult and draining. Also when I qualify as a Physician Associate, I will try my level best to fight my patients corner.

 

[Depleted]

Heard of the expression two heads are better than one.
In your case it sounds like one head with a brain would be
better.

I had this (although not as bad) with my aunt with different people not
knowing what was going on and saying different things or making
different arrangements.

Regarding the equipment at home, even though John is in rehab, you
might be better to arrange the delivery of the equipment as soon as
possible. At least it will be in place for when he does go home.
Otherwise you may find he gets delayed longer in rehab than
necessary.

Im not sure how quickly equipment can be delivered to you in your
neck of the woods, but it took 6 weeks to get the promised
hospital bed delivered for my Aunt. I was even given two different
delivery dates before it finally arrived. The Occupational Therapist
kept changing her mind about the type of bed and cancelling the
arrangements at the last minute.

So it might be helpful to make some enquirers as to how long it will
actually take to have the equipment delivered. If it is going to be a
matter of weeks, then you can delay getting it for a while. If it
will be months then you might need to consider getting things
in place while John is still in rehab.

Continuing to pray for you both.

His PT asked if we have steps into the house, and I told her not only that we do, but we also have steps to the bedrooms and bathroom. She said she's going to put in the request that they rehab him enough to take the steps.

Just in case, I already have plans on how to get his bed downstairs and his sofa upstairs, until it needs to be put back where it is now.

Right now, all I want for him is to finally get to rehab.

 

[Ariel82]

Maybe find a boy scout to build you ramps as their eagle scout project?

Keeping you in prayers.