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We're both CPAPers already, so I get what you're saying.I think the trach is short term.

I finally got someone to answer me about the TENS unit for his back. (Took a mere week. It being a weekend, they can't ask until Monday, since that's a PT department request.)

He was in the sitting position on the bed when I arrived. I get about one in 20 words he says, but when I asked how his back was doing, that was clear. "Awful." Then I asked if he wanted to stay sitting or lie down. "Lie down." I had trouble finding his nurse. (Same guy. Three days in a row now. Whoa. lol) But, when he came, he told John as long as he can sit up the better, because it helps expand his lungs more, but did he want something for the pain or to lie down.

John told him. "Pain med." (And then he gave the middle finger salute when the nurse left.) He mouthed something and shook his head.

15 minutes later, I got it. "He won't come back." I got it, because the nurse didn't come back.

So, I went to get the nurse again, and he asked if John wanted pain meds. (Um, didn't he already ask?)

That time I could tell the nurse would get it.

I asked John how long was he sitting up. "45 minutes." (Took a little effort to figure out if that was a curse word phrase -- guess which one -- 40 minutes of 45 minutes, but I got it with some more effort.) He smiled at how long he was sitting there but gave another shake of the head at the nurse. (I told John, I didn't know him as well, but didn't much like him either. I called at 7:30 this morning to ask that the doctor call back before I came in. Wasn't sure when I'd be in, since I didn't sleep much last night, but the same nurse said he'd have him call, since I was annoyed with how much effort it was just to find out if the TENS unit was a helpful idea. The doctor never called. The nurse told me the doctor called about noon. I couldn't sleep so I was sitting here from 11:30 to 1. My phone is 18 inches away. I was doing choirs upstairs and downstairs before that, but I can hear the phone anywhere in the house and had my ears on alert for it. So, don't like the nurse either. Not up to cursing him like John is, but don't like him.)

A woman stopped by. She said she was a doctor, but wasn't wearing the white coat. (I'm thinking maybe a PA, resident or fellow, which I guess is close enough.) She's the one who finally answered my question and said she'd order it on Monday, so I do like her.

And, since John was lowered into a more comfortable position after sitting for two hours, I left after that. (This time he told me to go, so whew, my worry that he wanted me for too long was just yesterday, when he was in distress. Not a problem with that.) But, since I only slept four toss-and-turn hours, I'm pretending it's two hours later than it is, so I can go to bed two hours early. That way, I can get there early tomorrow and use our TENS before they have him sit up. I keep thinking if his back has time to relax, sitting up won't be awful. Lousy, but not awful.

On a funny note. The reason I didn't sleep well when I tried taking a nap is I had a nightmare. John was finally able to eat his first meal and it was FISH! lol

John likes fish. But the feeling of terror I had was from another worry for the future. Because of John's traditional high blood pressure, (and his blood pressure is lower than mine now, and I'm good at 110/70. He's got me beat at weight AND blood pressure now, lol), he doesn't eat salt. He doesn't like salt on his food. Have you ever been served a meal without salt? I worry the hospital will serve him food with salt. I saw fish in the dream, but I think that was salt in reality.
 

JesusLives

Senior Member
Oct 11, 2013
14,551
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Prayers for you and John, for restored health. Hugs.
 

PopClick

Senior Member
Aug 12, 2011
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Lynn, I had a dream a few nights ago where I met you and John and you both looked healthy and happy as could be. I'm not saying that it "means" anything, but I thought it might make you smile. He was a LOT taller than you, lol, but I'm pretty sure you mentioned that on the forums. :)

You're both in my prayers.
 
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skylove7

Guest
Praise God!
Lynn just read the update and John sat up for 45 minutes
That is wonderful!

I will continue prayers
For his strength and recovery
God bless you both

In Jesus name amen
 
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Lynn, I had a dream a few nights ago where I met you and John and you both looked healthy and happy as could be. I'm not saying that it "means" anything, but I thought it might make you smile. He was a LOT taller than you, lol, but I'm pretty sure you mentioned that on the forums. :)

You're both in my prayers.
lol Not "a lot" taller, but taller. We've both lost at least an inch so far, but he's 6'1", and I'm 5'9". (Okay, so he has me beat on shrinking less too. He's lost an inch, and I've lost 1.25 inches. lol)

I've told him we got to the old before we got to the little in "little old couple." lol

At least now, I can go back to thinking some day we'll be that little old couple waddling hand-in-hand down the street.
 
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Prayers for you and John, for restored health. Hugs.
If I ever have the time and energy to get that printing cartridge I've needed in the last six weeks, that goes up on his bulletin board. Thank you.

(I pass a Staples store every time I go home, but I keep having a reason not to turn there. Seems like the good days to go were the holidays, which is when I refuse to go anywhere that doesn't need to be open on a major holiday.)
 
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I'm being hit on all three fronts.

1. Dad called twice last night. It's directly connected to my brother being assisted by cops to take his .38 (hand gun) away (See my post about "Prayers for Brother and Dad" for more details), and the upcoming court date. I don't know if he knows that mentally, but it is that. I couldn't take another barrage of calls again, so the second time I picked up and waited to find out why he thought he was calling. Since he again forgot what's going on with John, (I understand his memory is shot, but there are only two reasons he'd call now -- to see how I'm doing, which is very much connected to how John's doing, or to get me on "his side," as if he even has a side), I knew it was about him and there isn't a thing I can do for him but pray. I told him I loved him, but he has to read my letter again. ("Oh yeah, there is a letter around here somewhere.") I told him I can't do this anymore, but I love him. He pushed my best button. ("I'm your father and just wanted to see how you're doing, but if that's too much for you, I guess that's all to say." His best hurt voice too, but I know that same man calls my brother to cuss him out, calls another brother to tell him how he's been busy around the yard, and calls my sister to guilt her out on everything he wants her to do for him. I know that. It still worked.)

2. John is mostly awake now and busy breathing as much on his own as physically possible. Yesterday he was breathing on his own for 13 hours. WooHoo! But it's exhausting. It's also about as mentally unstimulating as anyone can do. Imagine your most important thing to think and do all day is lie there and breathe. There's a TV, but he doesn't have the strength to channel surf, (a hobby of his too. lol) So he watches football games that mean nothing to us, (our team is out, and other than how is Penn State doing, college football is merely a diversion at home for him between working out in the kitchen for some sumptuous meal and resting his sciatica), and the TV is small enough that I can't see the score on the screen with my glasses, so he can't either. If he doses off, unless he can hear the announcers say the score, he has no idea what he missed. He doesn't have the strength to read. Even if I bought a laptop, he doesn't have the strength to use it. He's got nothing but TV and a lot of white walls, ceilings and a hallway to watch. He's really taking great strides, but I worry he's going to go stir crazy now that he's awake more often. (Fortunately, the pain meds, which he only gets when he needs them, put him to sleep for a couple of hours.)

3. I'm back to nervous energy phase again. Yesterday, I cleaned both sets of sheets. (We sleep in separate rooms because we both have CPAP machines, different sleeping patterns -- although we're both insomniacs -- and he has dangerous Restless Limb. Sometimes he kicks so hard in his sleep he bashes his shin on the dresser, and that's two feet from his bed. He could break my leg or ribs, his limbs are so restless sometimes.) And then I made my bed, did two pile of dishes, cleaned the counter around his coffeemaker. (I don't usually dare do that for fear he'll need a cup of coffee after I pulled his coffee supplies out, so it's been quite some time since I cleaned back there.) Put my weekly pills into the morning/evening pill boxes. And made dinner.

Doesn't that sound like a normal day of housework? For most people that is. Add to that, I got home from seeing John at 1 PM after scraping ice off the car windows and then wiping condensation off the inside of the same windows to get there at 9 AM, and I'm disabled, so usually any one of those projects, (besides dishes, which I used to do most days), is my one and only project for the day. My back is killing me!

Plus, I only slept four hours last night. I thought I'd go visit John this morning again, except by the time it was 7 AM, I was ready to go back to sleep. I did. Only to have long involved nightmares. (All our neighbors found out about John so came over to gather. Some wanted to feed me, while most wanted me to feed them. The only person in my dream I recognized in real life is my neighbor who can only speak Italian, and she's the one telling me she wants to feed me... except in Italian, and whatever she wanted to feed me wasn't any food I've ever heard of before, and I know Italian food living in this neighborhood. lol I finally realized it's a dream, so tried to open my eyes. They wouldn't open. I pried them open with my fingers, only to see the same people in the same dream, so tried to open my eyes. Three tries before I opened my real eyes and woke up. Rolled over, tried to think of something other than that dream, and ended up in roughly the same dream, except this time John's whole family was over to comfort me, (three generations -- with us as the oldest generation -- of people in that family, so lots of people), and expected me to feed them. My house in my dreams is never my house, so much of it is being lost in a house I don't know, but it's supposed to be my house.)

I am still going to see John, but I also have to pick up a prescription of mine that I handed in before New Year's Eve, and need to stop at the store. Oh, and all that laundry I did (besides sheet), has to be at least brought upstairs, since I'm out of unmentionables. I need a day off, but this nervous energy and stuff I really need to get done stop me from taking one.

HELP! Please pray.
 
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I met John's case worker today. I didn't even know patients got case workers.

She was talking he has two choices (or he doesn't get the choices at all. The ICU team does. Or I get those two choices. Rather got lost on that detail.) The VA hospital wants him back as soon as he's able to go back. (The VA Hospital is paying for all this, so I would imagine it's cheaper to do it in-house.) So the two choices are:
1. He goes back while still on the ventilator and placed in the VA's ICU. (This hospital has 30 beds in their cardiac ICU. The VA has many less. I told her I had a rough estimate how many beds were in that hospital, since John has been in five of them now. lol But, the VA can only take him back into the ICU if they're not already full.)
2. He goes back once he's off the vent, but still with the trach.

At one point in time, it sounded like my choice. My only question was, "If they take him back into the ICU and then suddenly there are enough beds needed that this becomes a problem, will they remove him from ICU too soon?"

"No one can remove a patient from the ICU when on a ventilator."

So, I was fine with that, but she seemed to want me to tell which way to go.

Um, how would I know? Kind of figured they're the experts on that, but I would like to have John in the VA again. The patients are his kind of people -- vets. They're all very much into encouraging one another, and there seems an endless supply of military humor, with just enough sarcasm to know what's said is a mix of full honesty and humor together. John's kind of people, and just what he needs to go through rehab. That and who can rehab someone better than the military? I think they wrote the book while taking care of so many wounded warriors over the history of US wars. Civilians seem to spend too much committee time to figure out the same things.

So then she said the ICU team would make that decision.

I asked her When, knowing full well, she couldn't stamp an exact date, but I just asked, "within the week or longer?" (I think she's part of that civilian committee figuring out that kind of stuff. lol Just kidding, but no one ever likes asking my When questions.) The way she hemmed and hawed, it sounds like maybe within the week. (She used the word, "Stable." Yesterday, when talking to a doctor doing rounds, that doctor wouldn't use the word "stable." So my next question was, "Dang stable and headed all the way to fully stable?" Grins were exchange along with a faint head nod, so John is where I thought he was -- rounding third, but home is merely "stable," not where we live yet.) So then I asked, "Not tomorrow though?" No, no! No chance for tomorrow, but she thinks they might know when by tomorrow.

Much to her surprise, I said, "Good. Going to be bitter cold tomorrow, and I don't want him out on the coldest day of the year so far."

She chuckled and said he was going by ambulance and would only be out for a minute. I reminded her that even wrapped up, it's cold.

Now, they don't think I fully caught on to this, but a few days ago a nurse told me after the ICU, he'd go to a "Step-Down Unit." That disappeared the second the doctors found out he was from the VA. Apparently, rich people or people with really good health insurance get Step-Down. Ha! Don't care. The goal is home and relatively self-sufficient. (I can take care of him, but he's still bigger than I am, so I cannot lift him to help him up steps or to wash. I already figured out everything needed to convert our living room into his bedroom + our living room -- other than what do I do when he we're on different sleeping schedules and I don't want to disturb him while he sleeps. The only difference between our kitchen and the living room is an island to mark the change and tiles instead of area rugs and wooden floors, so I don't even want to grab a soda from the frig while he sleeps, in case the frig door wakes him up, or the floor squeaks.)

Anyone know exactly what "respiratory therapy" is once John gets off the vent? Only thing I can find is "we're great because we do that" sites or "let's see how much doctor jargon we can shove into one article" sites. I found out he'll need it, but I don't know what that means.
 
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John "stood" for 15 minutes yesterday. Not "stood" in the traditional sense like we'd all do, but with some new gadget that looks something like stretcher to keep him vertical. All this sitting and standing stuff is to get him to cough out the junk in his lungs, which, at least I'm imagining, strengthens him and his lungs over the long haul. But he stood! I feel like the mom who's baby went from on his knees to walking, while skipping crawling all together. So proud! (My younger brother was that baby, so I know it's not miraculous, and he's going to have to learn to crawl/sit eventually.)

AND, I rested. Wow! That was miraculous! Last night I was so calm it felt like a typical night for us before all this happened.Thank you, thank you, thank you. (Keep this up, and I might well ask to change the temperature from 16 degrees -- was 12 when I woke up, and it was only supposed to go down to 17 last night -- to back to the 50's and 60's. lol)

But one instant prayer answered, which I hope encourages everyone who prays and prays yet rarely see how God answers.
 
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oldthennew

Guest
Lynn,

those of us who are on this journey with you know what the 'power of prayer' can do..
and we can only rejoice for all of the benefits we share as a family in the unity of prayer...

please tell John that there are many brethren who love him and up-hold him & you in this time of need....
especially those of us who have been there and know the POWER first-hand.....
 
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I've told him often how many are praying for him. :)
 
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The hospital has awoken something in me they didn't want awake. Between seeing that huge wound where his skin was literally rubbed off, finding out his teeth were bleeding yesterday, and given four different excuses for why he can't drink anything, tomorrow John WILL DRINK WATER!

They just woke up the Wrath of Lynn.

I haven't been asking the right questions, (because I had no idea they needed to be asked), and John has been begging water from me for six days. Not for a seventh day.

"When I was thirsty, you gave me a drink." Lord, your promise! John needs that drink literally!
 
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jkalyna

Guest
Don't lose faith. I thank the Lord that he put you here, to open your heart, and share things with a spiritual family. Things done in hospitals aren't exactly like we would do at home.
Stay strong, and the Lord has sent an answer "to bear one another's burdens."
Father God, let Lynn rest from all of this distress, bring healing, touch him Father,
according to Galation 4:6 We cry unto thee, ABBA Father, through the precious blood of Jesus. WE are yours help us Lord, in this time, and prayer. Amen.
 
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I went to bed last night early. A doctor left a message at 12:38 that John HAS to get teeth pulled this morning. He has cavities. It's 7:52 and I just go off the phone with another oral surgeon who HAS to pull his teeth out because he has cavities and it can cause an infection. He had those cavities before all this hit. We're poor enough that we can't afford the cost of dentures. John has been losing his teeth for years and lost some more to the ventilator. When his teeth go, we can't afford to give him new one. These surgeons are fine pulling them out, but aren't going to replace.

AND, this is the latest in a long list of reasons he cannot drink.

I'm not against them going out, if they have to. I'm against making that decision for John when he's perfectly capable of making this one himself. I also don't think this is such a big emergency that they needed to call twice in the early hours of the day, particularly to someone just getting over any call is probably someone at the hospital telling me my husband died.

BTW, this was the day I decided to take off. This is why I don't get days off. I'm very upset right now and a bit angry that teeth decay is the reason I'm in a tail spin. Prayers for calmness, because I just cried at some oral surgeon (who is probably a student learning to be a surgeon) and a message machine for the Patient Advocate office. I hate crying and I'm not entirely sure people can understand me when I'm talking while crying.
 
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skylove7

Guest
Beauty happens with patience....
True love...and healing
Praise God!
Lifting John in prayer for strength, healing and love in Jesus Name
Amen
 

Pilkington

Senior Member
Jan 13, 2015
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I am sorry Lynn, you are having a tough day. I know it seems trivial about the teeth, but it is far more serious than it seems. I am training as a Physician Associate (equivalent to the US Physician Assistant), in Cardiology you are taught to look at the mouth when doing a cardiac examination, you look for tooth decay and poor dental hygiene as this can cause heart infections, something that you and John don't want particularly as he had a major heart attack and had a valve replacement. Without them dealing with the dental issues he would be at risk of Infective endocarditis (IE)/ bacterial endocarditis (BE) which would affect the valves.

I think the drinking is a tough one, even if you ask the right questions it does not always help. In my experience no-one will take responsibility particularly if it involves the in put of more than one doctor. Doctors are incredibly risk adverse. Unless their is an multi-disciplinary team meeting where things are discussed by all involved. When I had pneumonia last Autumn following a minor gyny procedure, the gynea team looked after me however when the physio said he couldn't see why I couldn't go home no-one from the gyny team would take the decision. Initially they wanted a respiratory consultant to see me. Waited a day no respiratory consultant. Following day saw the gyny consultant on the ward round and his words it isn't our area of expertise. So you are capable to treat me for pneumonia but not discharge me from hospital. For goodness sake he was a qualified doctor and there are hospital wide protocols for discharging patients following hospital acquired pneumonia when on antibiotics. In the end they got a consultant anesthetist who took the decision. A junior doctor said at last common sense prevails. You need one of the medics to be fighting your corner.

The wound is a pressure a sore, which he was at greater risk of because of the diabetes. I know they moved him regularly however I think that was probably preventable with the right kind of matrice and care.

I am praying that the doctors will work together so John can drink if it is safe to do so. That the doctors would put aside their ego's if that is the issue or that someone will be willing to take responsibility. That they would also improve their communication skills. I am also praying for healing of the wound. Amen
 
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Years ago, our fresh-produce huckster had a heart attack because one of his teeth abscessed, the abscess dislodged and traveled straight to his heart, took hold, and got worse. So I understand what can go wrong with teeth. All I wanted was to see John to tell him and let him make up his own mind.

Hurryhurryhurry because the operation is scheduled for early afternoon, so I did, only to get stuck in a traffic jam around the hospitals because a garage was full for 45 minutes. Hurryhurryhurry and I got the valet to take my car to park it so I could see John. Hurryhurryhurry and I finally gave all the info to John and he nodded to do it at 10 AM. An anesthetist called in the wee hours of the morning, and the second one called at 7:45.

I had them get word to that second one that I was waiting for him in John's room to give consent. By 10:30 I signed the consent for the oral surgeon, who told me he'd be taken down at 11:30. At noon, I told the nurse I'm going out for a quick cig. The anesthetist didn't come. By happenstance, at 12:30 (overhearing a conversation between John's nurse and another guy in the room, and then actually asked if it was about John), I found out Hurryhurryhurry meant the surgery would be at 7 PM now. I told the nurse I was going home, so have the anesthetist call me here.

Stopped off at the Patient Advocate's office, and was home by 1:20. (Pretty cool, since the valet had to get my car for me.) I didn't know how many ways one person could be this exhausted. I want a nap so badly.

Hurryhurryhurry but it's now 4:25 and the anesthetist isn't that much in a hurry. I haven't heard back, so I don't know if John really is getting that operation.