NEED PRAYER NOW
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D
(Quicky note. Got to go to bed early tonight.)
"David Bowie died." The first sentence John said not related to hospitals and health stuff. (Between the medications, he's taking and his reading glasses are at home, my letter chart does him no good, so he mouthed the letters until I guessed right.) Funny thing. I don't like watching the news, so John is usually my source for news. Sure enough, he's still my source for news.
John's tush is the thing that causes him excruciating pain sitting in the chair. They want him to sit at least two hours. He's done in ten minutes, even when they put a special pillow under him. He accepted pain meds after half an hour, but he told me it doesn't do anything for him. I suggested it makes him sleep so at least he doesn't notice the pain as much. I did tell the doctor and nurse, but they insisted he has to sit. (I suggested hanging him up as a better alternative. They can hoist him to the chair, so it ought to be doable.) Told the nurse twice, so she relented down to 1.5 hours. And then John's PT stopped by to visit him after an hour. His say got John a reprieve at 70 minutes -- just in time for the pain meds to knock him out.
BUT good news. John's out of there tomorrow. No, he's not coming home. He's finally going back to the VA. He doesn't care. I hope they can do better with worrying about his tush. I keep thinking anyone who can make wounded soldiers better has to have skills most hospitals don't. Also, although HUP, (Hospital of the University of Pennsylvania), is the eighth best hospital in the country for cardiac care and seventh for trauma, they only get a 4 out of 10 for everyday patient care. After what we've been through, that seems accurate. They saved his life, which I will be eternally grateful for, but I do hope VA can get him better easier and faster. Who knows? Maybe they'll even let him drink and then eat.
Oh, and he's going to the VA tomorrow. Another caseworker told me at 10 AM that they were trying to see when this week. I left a message for the original one at 4 to find out when, because I have a doctor's appointment tomorrow and have to take a bus to see him. At 4:30, the original caseworker called back to tell me it was tomorrow, but she doesn't know when or where (other than the VA. Big place. I need to know where I'm going when I get there.) So, either they'll call me before I have to leave (10 AM), or I have to call them after the appointment. I'm betting on the latter. I'm wondering if someone can tell me then too, since I leave messages.
"David Bowie died." The first sentence John said not related to hospitals and health stuff. (Between the medications, he's taking and his reading glasses are at home, my letter chart does him no good, so he mouthed the letters until I guessed right.) Funny thing. I don't like watching the news, so John is usually my source for news. Sure enough, he's still my source for news.
John's tush is the thing that causes him excruciating pain sitting in the chair. They want him to sit at least two hours. He's done in ten minutes, even when they put a special pillow under him. He accepted pain meds after half an hour, but he told me it doesn't do anything for him. I suggested it makes him sleep so at least he doesn't notice the pain as much. I did tell the doctor and nurse, but they insisted he has to sit. (I suggested hanging him up as a better alternative. They can hoist him to the chair, so it ought to be doable.) Told the nurse twice, so she relented down to 1.5 hours. And then John's PT stopped by to visit him after an hour. His say got John a reprieve at 70 minutes -- just in time for the pain meds to knock him out.
BUT good news. John's out of there tomorrow. No, he's not coming home. He's finally going back to the VA. He doesn't care. I hope they can do better with worrying about his tush. I keep thinking anyone who can make wounded soldiers better has to have skills most hospitals don't. Also, although HUP, (Hospital of the University of Pennsylvania), is the eighth best hospital in the country for cardiac care and seventh for trauma, they only get a 4 out of 10 for everyday patient care. After what we've been through, that seems accurate. They saved his life, which I will be eternally grateful for, but I do hope VA can get him better easier and faster. Who knows? Maybe they'll even let him drink and then eat.
Oh, and he's going to the VA tomorrow. Another caseworker told me at 10 AM that they were trying to see when this week. I left a message for the original one at 4 to find out when, because I have a doctor's appointment tomorrow and have to take a bus to see him. At 4:30, the original caseworker called back to tell me it was tomorrow, but she doesn't know when or where (other than the VA. Big place. I need to know where I'm going when I get there.) So, either they'll call me before I have to leave (10 AM), or I have to call them after the appointment. I'm betting on the latter. I'm wondering if someone can tell me then too, since I leave messages.
D
They've done it AGAIN! John is supposed to go to the VA today. Either the caseworker was supposed to call me before I went for my doctor's appointment, (I had to leave at 10 AM, but the caseworker starts her day at 7 AM) or I was supposed to call them after my appointment. So, as expected, I called them after my appointment. AND, as expected the one and only person who knew what was going on, (John's nurse. Sure, and I have property just east of Atlantic City to sell), wasn't available, which I found out by waiting on hold for 10 minutes at my doctor's office.
Whomever I talked to after that, expected me to wait until they can call me back. Yeah, been there, done that, and a mere 12 hours later and six phone calls later someone called me back. So, I left a message for John that I can't see him today, because no one knows where he'll be when I come.
And then I came home. And then I called the VA under the assumption they'd know when he was coming. They don't know when he's coming, other than not today. They're full.
At this point, I honestly think they're trying to screw up!
God help anyone who has a family member as a patient at the Hospital of the University of Pennsylvania. They'll save your life, but they'll lose you in paperwork after that.
Whomever I talked to after that, expected me to wait until they can call me back. Yeah, been there, done that, and a mere 12 hours later and six phone calls later someone called me back. So, I left a message for John that I can't see him today, because no one knows where he'll be when I come.
And then I came home. And then I called the VA under the assumption they'd know when he was coming. They don't know when he's coming, other than not today. They're full.
At this point, I honestly think they're trying to screw up!
God help anyone who has a family member as a patient at the Hospital of the University of Pennsylvania. They'll save your life, but they'll lose you in paperwork after that.
So sorry that John hasn't been able to move to VA and that their communication has been so poor. Sadly it doesn't surprise me. One of the reasons I want to become a Physician Associate (Assistant) is to improve care of patients yes I am a bit of an idealist, also once I qualify I will endeavour to keep my word and communicate with next of kin.
I will be praying that a bed becomes available VA and that he will be able to be moved to their. I am also praying that they will be able to help with the pain caused by sitting.
It may depend on why sitting is painful, as to how they need to deal with it. Maybe they could work up gradually so he can tolerate sitting for longer, maybe different chair or bed. I don't think you can stay in hoist, also the straps can cause tissue damage etc. I will be praying that someone comes up with something that will help with pain. Pain is horrific but different people respond to pain relief differently. Different pain meds work differently. Stronger pain relief tend to just change perception of pain I can remember being on opiod pain relief I can't explain it I knew I was in pain but I just didn't care very strange feeling. Also for certain pain, certain anti-epileptics or antidepressants can be affective, different does to those you would use for those conditions. I can remember a friend who worked as a MacMillan nurse (cancer care in community) found that low dose sedatives (below the dose that would cause sedation) was effective for certain types of pain and so would ask doctors to prescribe that.
I will be praying that a bed becomes available VA and that he will be able to be moved to their. I am also praying that they will be able to help with the pain caused by sitting.
It may depend on why sitting is painful, as to how they need to deal with it. Maybe they could work up gradually so he can tolerate sitting for longer, maybe different chair or bed. I don't think you can stay in hoist, also the straps can cause tissue damage etc. I will be praying that someone comes up with something that will help with pain. Pain is horrific but different people respond to pain relief differently. Different pain meds work differently. Stronger pain relief tend to just change perception of pain I can remember being on opiod pain relief I can't explain it I knew I was in pain but I just didn't care very strange feeling. Also for certain pain, certain anti-epileptics or antidepressants can be affective, different does to those you would use for those conditions. I can remember a friend who worked as a MacMillan nurse (cancer care in community) found that low dose sedatives (below the dose that would cause sedation) was effective for certain types of pain and so would ask doctors to prescribe that.
D
The cause of his pain is a 4 inch by 2.5 inch hole in his "sitting cheek." No skin above it, only that barrier the body created. I also know they had him "stand" one day. (I know he was strapped onto something, so he wasn't standing on his own, but it sounded vertical, which is what they want from his upper half.)
Two hours after the VA told me he's not scheduled for today, and 28 hours after I was promised a call, the caseworker who said he'd be going to the VA today (and would call me) called to tell me not today. She also had the nerve to ask if I spent the day resting. (She didn't even remember I had a doctor's appointment. And, by the end of the conversation, John became "the patient," so she couldn't even remember who she was talking about.)
Add to that, since no one was answering the obvious question earlier, I took it back to that Nurse Manager who promised I could meet with John's team early this week to tell her I want to know. First, apparently someone stopped by when I was there to talk to me. And, I do remember her stopping by along with 50 other people stopping in John's room, but she never told me she was "a meeting with John's team," so, by the time she left, I was simply wondering who she was and why she came into the room. Second, she promised she'd get me John's doctor, (who she named), to call me ASAP. Instead, I got another Nurse Practitioner calling me, because Kelly (the Nurse Manager) said I was "confused" about when John was going to the VA. Confused? I was clear before any of them were clear. All I had to do was ask the VA when John was coming and I got my answer.
Now I'm promised a call tomorrow. ROFL!
Two hours after the VA told me he's not scheduled for today, and 28 hours after I was promised a call, the caseworker who said he'd be going to the VA today (and would call me) called to tell me not today. She also had the nerve to ask if I spent the day resting. (She didn't even remember I had a doctor's appointment. And, by the end of the conversation, John became "the patient," so she couldn't even remember who she was talking about.)
Add to that, since no one was answering the obvious question earlier, I took it back to that Nurse Manager who promised I could meet with John's team early this week to tell her I want to know. First, apparently someone stopped by when I was there to talk to me. And, I do remember her stopping by along with 50 other people stopping in John's room, but she never told me she was "a meeting with John's team," so, by the time she left, I was simply wondering who she was and why she came into the room. Second, she promised she'd get me John's doctor, (who she named), to call me ASAP. Instead, I got another Nurse Practitioner calling me, because Kelly (the Nurse Manager) said I was "confused" about when John was going to the VA. Confused? I was clear before any of them were clear. All I had to do was ask the VA when John was coming and I got my answer.
Now I'm promised a call tomorrow. ROFL!
J
Did they tell you it was a decubitus ulcer on his buttocks. If he is a little frail putting pressure on the area, will cause the skin to break, due to poor circulation, or maybe it's something else. Lyn you sound like your having a hard time with communicating to the personal. Father God, Lynn is going through a lot of emotions, and stress. Help her if possible to get him home, and get good in home care one on one, and a relaxed, atmosphere for both of them, Lord thank you for you love us, help Lynn Palsm 91. The Lord will provide.That could be a dangerous scenario, of bacteria getting into exposed blood vessels, and daily care should be done, or more, to avoid septicemia. Maybe you need another Dr. one who's orders will be taken and done immediately on John's welfare and behalf. Be of good courage, the Lord will strengthen your heart.
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There is no in-home health care in our future. That cost money we don't have and our government won't provide. (I'm thrilled he's getting dentures, thanks to money from Dad.)
And he does have a specialist who manages that sore. She puts honey-with-something on it. I'm not saying that lightly, since I know honey has antibacterial properties. And she's the one who offered the special pillow the other day. Yes, the pillow was soft. It didn't take enough of the sting out. And, yes, I know this wound can lead to sepsis. That's my biggest fear at this point. My aunt had a heart attack and the heart attack didn't kill her. Staf infection in the hospital did three weeks later.
My next hope is the VA will implement better choices.
Added bonus: Last night we had rain, and then far below 32 F temperatures, so there is black ice on the roads. The ice will melt, of course, but the best time to see John is early before they move him, (if they move him.) I've been up long enough to be ready to see him now, but can't do now because of the black ice. (I want thousands of cars to wear off the black ice first. lol)
And he does have a specialist who manages that sore. She puts honey-with-something on it. I'm not saying that lightly, since I know honey has antibacterial properties. And she's the one who offered the special pillow the other day. Yes, the pillow was soft. It didn't take enough of the sting out. And, yes, I know this wound can lead to sepsis. That's my biggest fear at this point. My aunt had a heart attack and the heart attack didn't kill her. Staf infection in the hospital did three weeks later.
My next hope is the VA will implement better choices.
Added bonus: Last night we had rain, and then far below 32 F temperatures, so there is black ice on the roads. The ice will melt, of course, but the best time to see John is early before they move him, (if they move him.) I've been up long enough to be ready to see him now, but can't do now because of the black ice. (I want thousands of cars to wear off the black ice first. lol)
Hi Lynn, Good to see your husband is getting help with that nice PT Man, I'm always pleased to see someone who helps your situation with John. Rod is still having bad days, its a worry, as I know he hates going to Doctors. It worry alot about another stroke or even something strange like another blood clot etc. I must admit Its taking its toll with me, and I get head aches. I feel you and me lynn are really reaching out. I am here if ever you want to chat. I know what its like to feel alone. I keep on praying for your husband, I get a good feeling with this PT Man. I give everything to the Lord and everytime you speak on here its a blessing to your courage. I pray That God provides you with the best people around John your Husband. xxx
O
hubby and I are so impressed with the 'support team' that is backing Lynn and John...
praise God! we love and appreciate you all and your words of knowledge and wisdom that are coming
from your 'first-hand-experiences'...
I would like to share that when in situations like this, all of our reserves will soon become null & void,
'depleted' - this is how we lose and they win,,,,
we must learn from all of the mistakes that those who are in authority are making, take them to heart and
learn to trust yourselves and your Faith to get the job done the right way, God's Way,.,.,
don't let them use the 'fear of death or personal weakness' to their advantage and their control.....
yes, there are occasionally those who 'really do care' but, they are far and few in-between'..
this hurts a lot, but it is REALITY....all who have been reading Lynn's scripts, cannot help but to see
the reality of her situations....'heart-breaking', to say the least.....
Lynn, you and Jesus are John's only true Hope and Strength...we pray for your strength, faith, and guidance
in our Father's loving will.....
praise God! we love and appreciate you all and your words of knowledge and wisdom that are coming
from your 'first-hand-experiences'...
I would like to share that when in situations like this, all of our reserves will soon become null & void,
'depleted' - this is how we lose and they win,,,,
we must learn from all of the mistakes that those who are in authority are making, take them to heart and
learn to trust yourselves and your Faith to get the job done the right way, God's Way,.,.,
don't let them use the 'fear of death or personal weakness' to their advantage and their control.....
yes, there are occasionally those who 'really do care' but, they are far and few in-between'..
this hurts a lot, but it is REALITY....all who have been reading Lynn's scripts, cannot help but to see
the reality of her situations....'heart-breaking', to say the least.....
Lynn, you and Jesus are John's only true Hope and Strength...we pray for your strength, faith, and guidance
in our Father's loving will.....
D
The majority is good news today.
I did see John at HUP. They told me he was definitely going to the VA this afternoon, but I didn't believe them until they told me he was scheduled for 5 PM and which room he'd have.
He was off the vent for 16 hours yesterday. (That's big.) They were aiming for 18 today. According to HUP, once he's off the ventilator nonstop for 72 hours, he's off for good. (I don't know what the VA says.) Assuming nothing else happens with him, once he's off for good, he's also out of the ICU. That means he may not be in the ICU much longer. (He still has recovering after that, but less "tensive" is good.)
His oxygen levels are great! (One of those numbers on that screen ICU patients have that always show their "vitals" tells oxygen levels.) Used to be that when he was off the vent and that number went down below 90, they'd either forced air into his lungs or put him back on the vent. When he's on the vent, it's usually 97-99, but the last few days, when he's off the vent, it's still 97-99. So, that's great!
And the one thing that made this visit not hit the "all good news" status was his hips. They hurt. Presumably, from lying in that bed for so long, but I regret I was rattling on, until he caught my attention. Whatever he wanted me to know, it was important enough not to ever get a "never mind." (Since he can't talk, sometimes he mouths it, I try to guess, can't, he gets frustrated, so mouths, "never mind.") He tried spelling it out. The letter chart frustrates him, because he doesn't have his reading glasses, (biggest size possible to fit on one page), there's a monitoring cuff on his pointing finger, and he's weak enough that that much work tires him. And yet, he goes for a full sentence instead of keywords. We went all the way to I-N-E-E-D-H-E before I guessed he needed help.
I go find his nurse and he mouths something to her. (One syllable.) She immediately asks if it's his hips. (I didn't know. Worse yet, he's pointed to his hips before, but that was back when he couldn't even raise an arm or straighten out his fingers, so I thought he was pointing to his feet or something on the wall. Yeesh! I am never going to play charades! I'm lousy at it.) She asks him what the pain level is. 8! Yikes!
He gets a needle. For his tush, he gets something pumped into his feeding tube, which then takes half an hour to work. Needle means "hurry up."
I stayed with him until the pain level hit, "Ahhhhh!" (Pain levels usually don't go away. They just hit a stage of relief.) When he hit there, I asked him the pain level. 2. Good pain relief.
Tomorrow I go visit him at the VA. (I checked at 6:45 and they were setting him up in the room. I guess 5 PM really meant 6 PM.)
I could use prayers on getting there tomorrow. The googled directions are vague. But, hey! Once God gave me confidence to take the worse road in the area, I'm not half as scared as I was the last time.
I did see John at HUP. They told me he was definitely going to the VA this afternoon, but I didn't believe them until they told me he was scheduled for 5 PM and which room he'd have.
He was off the vent for 16 hours yesterday. (That's big.) They were aiming for 18 today. According to HUP, once he's off the ventilator nonstop for 72 hours, he's off for good. (I don't know what the VA says.) Assuming nothing else happens with him, once he's off for good, he's also out of the ICU. That means he may not be in the ICU much longer. (He still has recovering after that, but less "tensive" is good.)
His oxygen levels are great! (One of those numbers on that screen ICU patients have that always show their "vitals" tells oxygen levels.) Used to be that when he was off the vent and that number went down below 90, they'd either forced air into his lungs or put him back on the vent. When he's on the vent, it's usually 97-99, but the last few days, when he's off the vent, it's still 97-99. So, that's great!
And the one thing that made this visit not hit the "all good news" status was his hips. They hurt. Presumably, from lying in that bed for so long, but I regret I was rattling on, until he caught my attention. Whatever he wanted me to know, it was important enough not to ever get a "never mind." (Since he can't talk, sometimes he mouths it, I try to guess, can't, he gets frustrated, so mouths, "never mind.") He tried spelling it out. The letter chart frustrates him, because he doesn't have his reading glasses, (biggest size possible to fit on one page), there's a monitoring cuff on his pointing finger, and he's weak enough that that much work tires him. And yet, he goes for a full sentence instead of keywords. We went all the way to I-N-E-E-D-H-E before I guessed he needed help.
I go find his nurse and he mouths something to her. (One syllable.) She immediately asks if it's his hips. (I didn't know. Worse yet, he's pointed to his hips before, but that was back when he couldn't even raise an arm or straighten out his fingers, so I thought he was pointing to his feet or something on the wall. Yeesh! I am never going to play charades! I'm lousy at it.) She asks him what the pain level is. 8! Yikes!
He gets a needle. For his tush, he gets something pumped into his feeding tube, which then takes half an hour to work. Needle means "hurry up."
I stayed with him until the pain level hit, "Ahhhhh!" (Pain levels usually don't go away. They just hit a stage of relief.) When he hit there, I asked him the pain level. 2. Good pain relief.
Tomorrow I go visit him at the VA. (I checked at 6:45 and they were setting him up in the room. I guess 5 PM really meant 6 PM.)
I could use prayers on getting there tomorrow. The googled directions are vague. But, hey! Once God gave me confidence to take the worse road in the area, I'm not half as scared as I was the last time.
D
I feel delightfully evil in the weirdest way possible. Much happened that John hates, but I'm happy just because I understand what this means more than he does.
-- John's hips are killing him. (On the pain scale, he maxed out when he said "ten.") What he wanted the most was to lie down flat. I'm guessing that's the only way they aren't hurting terribly. But, he can't lie flat while he's being fed through the tube, because the food (STILL baby formula) could aspirate in his lungs. (I can now use the word "aspirate" correctly in a sentence. I'm learning medical stuff I always worked at NOT knowing.) So his nurse tells him he can lie down after that bag empties. I watch him twitch make faces, clench fist, twitch toes, (and think, "Hey! Look at that. He's moving his feet finally"), mouth the word "Owww," and even hear him say "Ow!" (The only noise that comes out is the mucus in his lungs, but it's kind of like belching the alphabet. It's not his voice doing it, but it is real words and coming out of his throat, disgusting, but real words from John. Mark that down as another reason I'm feeling delightfully evil. I was glad to hear him for the first time in a couple of weeks, and unlike that horrible day when they took out the vent and he was gasping for breath for eight hours, this time I could understand the few words he did say.) But he writhed in pain and I waited for the bag of "food" to lower. And then I noticed, after half an hour and then an hour, it wasn't lowering to any degree I could tell and he was in horrible pain. The nurse wanted to know if he wanted pain meds. (Oxycodone. The one pain med he hates, and I don't know the one HUP gave him that worked, and he would have preferred.) He didn't. But after an hour of that pain, and the food wasn't lowering in the bag, I asked him if he wanted me to get the nurse. He did. She comes in and asks him if he wants pain meds. He took it, but out of resignation and I could tell he didn't really want it, but couldn't get what he did want. He didn't want to sleep. Oxycodone was guaranteed to make him sleep. (Then I figured out why the bag wasn't emptying. She inserts the oxycodone into that feeding tube, except it's clogged, so spills a little. She got rid of the clog by pushing liquid through the tube, and then the meds got through easily. Half an hour later the bag was empty, he could lie down, but by then he was also sleeping.)
-- He wanted water. Specifically, he wanted me to give him a little sip of water. I finally have an answer to when he can drink. (A real one. Not the 20 different excuses nurses and doctors gave me at HUP.) So I told him, even I won't give him any until that trach is out. There's a balloon cushioning that trach on the inside, which guarantees, if he drank water, it would go in his lungs, which means he could get pneumonia again, which means it would be 20 steps back. So I wouldn't.
-- Next lunch was making the rounds in his wing. He told me, "Feed me!" Same problem as drinking, if any food goes down, it would end up in his lungs, not his stomach, so, NO. I couldn't do that for him either.
So, after telling him no so often, why am I feeling delightfully evil? They're going to leave him on the trach collar overnight! He's oxygenating in the 90% range. (Another word I can use properly in a sentence now, but that's become a good word, so I don't mind learning that one.) He was wheezing, his oxygen wandered down to 93, (below 90 means they put him on the vent right away), and I told him to cough! He did. His oxygen wandered back up to 97-99 right afterward, so all he needs to do is cough, when that machine beeps. If he can make it 72 hours without that vent, he gets "a swallow test."
The delightfully evil part now. "Swallow test." To make sure he can swallow, they give him the one thing he has been begging for for over two weeks now -- WATER! (Muhahahahaha! My evil laugh.) If he passes that test, they start giving him the next thing he wants -- food! Pudding and/or applesauce.
When we were first married, John and I went on a special "milkshake" diet. (I know milkshake, and that wasn't it, but it had the same consistency, and it worked. lol) We couldn't eat food for three days and drank that milkshake/diet drink four times a day. The first food we ate after that was raw mushrooms with a mustard dip. That has to be the tastiest food we've ever had. Applesauce or pudding will make that seem blah to him! This will be like surf n' turf!
So, I denied John the three things he wanted the most, but with the purpose of having him get all three soon. Soon as in possibly this weekend!
How does that help his hip? His hips hurt from lying down so long, so the very thing that stops them from hurting is the thing that causes them to hurt. He had PT today. They had him try to sit at the side of his bed, but he got dizzy. I know he was able to (with two men holding him up) before without getting dizzy. What he doesn't know is I saw him do three things he couldn't do the beginning of this week -- raise his head off the pillow for minutes at a time, go back to talking with his hands in motion, and move his feet. He should be able to sit at the edge of his bed right about the time they don't have to spend minutes trying to figure out how to keep that vent poised for action when he sits on the side of his bed. Sit up and do stuff ought to cut down on hip pain.
I also saw someone today I haven't seen since November 21st! The doctor who saved John's life. Last time I saw him I was a jumble of crying, nonsensical syllables. He asked me if I remembered him. Ha! I told him, "You're First Doctor. The guy who saved his life." We both gave that "whew" look. Neither one of us thought John would make it through that first day. Now we're both excited at the progress.
Good thing we know it. John is angry with everyone for not getting his way. John now knows a bit about what's going on with Dad. (Dad is out of detox. Apparently, he didn't have any terrible detox to go through. Fortunately, he's quit a couple of other times, so he knows there can be life without booze. Today Dad went to his new home. Prayers for brother, because as many times as my brother has told him he's not going home, Dad is sure going through detox means he goes home today.) What John doesn't know is I've had many lessons in the last few weeks on how to say no to someone I love because what they want may seem perfectly reasonable in their minds, but it's not reasonable at all.
I'm happy because John is quickly getting off the vent and then out of ICU. John is furious he's not getting the pain relief he wants now, can't drink and can't eat. (Delightfully evil. lol)
AND! He's lost 75-80 pounds in the last two months. After all this, he only needs to lose another 10-15 pounds. (He threw out all his "skinny clothes" last summer. lol) He's going to need clothes when he gets to rehab. Fortunately, he gave me a pair of sweatpants that he'd never fit in again, and I couldn't wear them for the same reason I can't wear clothes that bind at the waist, but I kept them to take out the trash. If they're not too big, maybe I can judge what size he needs.
(I just hit the 40 pound mark on my weight loss. Yay! I've lost 40 pounds since May 27, 2013. Hey, slower, but much easier than his way. lol)
Oh! And getting to the VA is much easier than to HUP, it doesn't cost money to park, the vending machines are much cheaper with healthier alternatives, (I found rice Krispie treats, Joi. lol), and I already know my way around that hospital. Other than the shock of seeing the same spot I dropped John off in front of the ER before parking the car that eventful Saturday two months ago, it was great being home! Even the wrens are well fed there. That's how nice people are. lol
-- John's hips are killing him. (On the pain scale, he maxed out when he said "ten.") What he wanted the most was to lie down flat. I'm guessing that's the only way they aren't hurting terribly. But, he can't lie flat while he's being fed through the tube, because the food (STILL baby formula) could aspirate in his lungs. (I can now use the word "aspirate" correctly in a sentence. I'm learning medical stuff I always worked at NOT knowing.) So his nurse tells him he can lie down after that bag empties. I watch him twitch make faces, clench fist, twitch toes, (and think, "Hey! Look at that. He's moving his feet finally"), mouth the word "Owww," and even hear him say "Ow!" (The only noise that comes out is the mucus in his lungs, but it's kind of like belching the alphabet. It's not his voice doing it, but it is real words and coming out of his throat, disgusting, but real words from John. Mark that down as another reason I'm feeling delightfully evil. I was glad to hear him for the first time in a couple of weeks, and unlike that horrible day when they took out the vent and he was gasping for breath for eight hours, this time I could understand the few words he did say.) But he writhed in pain and I waited for the bag of "food" to lower. And then I noticed, after half an hour and then an hour, it wasn't lowering to any degree I could tell and he was in horrible pain. The nurse wanted to know if he wanted pain meds. (Oxycodone. The one pain med he hates, and I don't know the one HUP gave him that worked, and he would have preferred.) He didn't. But after an hour of that pain, and the food wasn't lowering in the bag, I asked him if he wanted me to get the nurse. He did. She comes in and asks him if he wants pain meds. He took it, but out of resignation and I could tell he didn't really want it, but couldn't get what he did want. He didn't want to sleep. Oxycodone was guaranteed to make him sleep. (Then I figured out why the bag wasn't emptying. She inserts the oxycodone into that feeding tube, except it's clogged, so spills a little. She got rid of the clog by pushing liquid through the tube, and then the meds got through easily. Half an hour later the bag was empty, he could lie down, but by then he was also sleeping.)
-- He wanted water. Specifically, he wanted me to give him a little sip of water. I finally have an answer to when he can drink. (A real one. Not the 20 different excuses nurses and doctors gave me at HUP.) So I told him, even I won't give him any until that trach is out. There's a balloon cushioning that trach on the inside, which guarantees, if he drank water, it would go in his lungs, which means he could get pneumonia again, which means it would be 20 steps back. So I wouldn't.
-- Next lunch was making the rounds in his wing. He told me, "Feed me!" Same problem as drinking, if any food goes down, it would end up in his lungs, not his stomach, so, NO. I couldn't do that for him either.
So, after telling him no so often, why am I feeling delightfully evil? They're going to leave him on the trach collar overnight! He's oxygenating in the 90% range. (Another word I can use properly in a sentence now, but that's become a good word, so I don't mind learning that one.) He was wheezing, his oxygen wandered down to 93, (below 90 means they put him on the vent right away), and I told him to cough! He did. His oxygen wandered back up to 97-99 right afterward, so all he needs to do is cough, when that machine beeps. If he can make it 72 hours without that vent, he gets "a swallow test."
The delightfully evil part now. "Swallow test." To make sure he can swallow, they give him the one thing he has been begging for for over two weeks now -- WATER! (Muhahahahaha! My evil laugh.) If he passes that test, they start giving him the next thing he wants -- food! Pudding and/or applesauce.
When we were first married, John and I went on a special "milkshake" diet. (I know milkshake, and that wasn't it, but it had the same consistency, and it worked. lol) We couldn't eat food for three days and drank that milkshake/diet drink four times a day. The first food we ate after that was raw mushrooms with a mustard dip. That has to be the tastiest food we've ever had. Applesauce or pudding will make that seem blah to him! This will be like surf n' turf!
So, I denied John the three things he wanted the most, but with the purpose of having him get all three soon. Soon as in possibly this weekend!
How does that help his hip? His hips hurt from lying down so long, so the very thing that stops them from hurting is the thing that causes them to hurt. He had PT today. They had him try to sit at the side of his bed, but he got dizzy. I know he was able to (with two men holding him up) before without getting dizzy. What he doesn't know is I saw him do three things he couldn't do the beginning of this week -- raise his head off the pillow for minutes at a time, go back to talking with his hands in motion, and move his feet. He should be able to sit at the edge of his bed right about the time they don't have to spend minutes trying to figure out how to keep that vent poised for action when he sits on the side of his bed. Sit up and do stuff ought to cut down on hip pain.
I also saw someone today I haven't seen since November 21st! The doctor who saved John's life. Last time I saw him I was a jumble of crying, nonsensical syllables. He asked me if I remembered him. Ha! I told him, "You're First Doctor. The guy who saved his life." We both gave that "whew" look. Neither one of us thought John would make it through that first day. Now we're both excited at the progress.
Good thing we know it. John is angry with everyone for not getting his way. John now knows a bit about what's going on with Dad. (Dad is out of detox. Apparently, he didn't have any terrible detox to go through. Fortunately, he's quit a couple of other times, so he knows there can be life without booze. Today Dad went to his new home. Prayers for brother, because as many times as my brother has told him he's not going home, Dad is sure going through detox means he goes home today.) What John doesn't know is I've had many lessons in the last few weeks on how to say no to someone I love because what they want may seem perfectly reasonable in their minds, but it's not reasonable at all.
I'm happy because John is quickly getting off the vent and then out of ICU. John is furious he's not getting the pain relief he wants now, can't drink and can't eat. (Delightfully evil. lol)
AND! He's lost 75-80 pounds in the last two months. After all this, he only needs to lose another 10-15 pounds. (He threw out all his "skinny clothes" last summer. lol) He's going to need clothes when he gets to rehab. Fortunately, he gave me a pair of sweatpants that he'd never fit in again, and I couldn't wear them for the same reason I can't wear clothes that bind at the waist, but I kept them to take out the trash. If they're not too big, maybe I can judge what size he needs.
(I just hit the 40 pound mark on my weight loss. Yay! I've lost 40 pounds since May 27, 2013. Hey, slower, but much easier than his way. lol)
Oh! And getting to the VA is much easier than to HUP, it doesn't cost money to park, the vending machines are much cheaper with healthier alternatives, (I found rice Krispie treats, Joi. lol), and I already know my way around that hospital. Other than the shock of seeing the same spot I dropped John off in front of the ER before parking the car that eventful Saturday two months ago, it was great being home! Even the wrens are well fed there. That's how nice people are. lol
O
Praise God, Lynn...
so much to be thankful for, especially the daily, little, triumphs....
if John keeps improving this way, i fear that i'll have to 'detox' off of your writing Lynn,
I've become an addict...
please give John that many of us here at CC are thinking about him and praying for you both....
so much to be thankful for, especially the daily, little, triumphs....
if John keeps improving this way, i fear that i'll have to 'detox' off of your writing Lynn,
I've become an addict...
please give John that many of us here at CC are thinking about him and praying for you both....
Lynn is showing what creative writing is all about, love those words etc and love the fact how talented Lynn is. God's love will always stay with you Lynn, you are very clever lady. And the progress John is making is wonderful. I must admit I've felt a big cloud for a few weeks in my own life and felt and read your daily stories,but I get the feeling it's lifting now that cloud for you and myself. Praise God xx
D
I just wrote his progress report. (Lots of others praying for him too, so when I'm tired, I write one "report" for all.) Little problem. It's 4 pages long. (I'm utterly exhausted mentally and physically, so I'll have to shorten tomorrow.)
The highlight reel version though:
1. JOHN CAN TALK! (He got a cuff for his trach that lets him talk, sip, and eat. (The "eat" part is eventually.) All this time, I thought sipping was his number 1 want, but once he talked, he then burst out crying and said, "I thought I'd never talk again."
2. JOHN SIPPED! Think of the best thing you've ever drank in your life. That ice water was better than that to him He's still only allowed to sip, but, not only does he sip, he holds the glass too.
3. His mind is so confused I didn't even know it was possible to be that confused. I was talking about possible thick soups I could bring in so he can feel full when he eats without haveing to worry about not being able to chew. Then he asked, "Do we have a refrigerator?"
I thought I heard him wrong, but he repeated the same thing. I told him we have two -- a small one upstairs and a regular one in the kitchen. He was surprised like I had just told him we had two Rolls Royces. Then he asked, "Do they fit?" I thought he wanted to know if the soup would fit in the frig. Nope. He wats to know if the frig fits in our house.
So I asked him what he thought our house was. "Three cars." I thought that was an address and I missed part of it, but he repeated that.
I tried to keep my poker face, but he later told me he wanted me to know he's not crazy. He then knew what a refrigerator was. And then asked if we lived in an apartment. "Nope. A rowhome." Again, astonished. "Wow! Two-stories?" "And a basement." "Wow! Cool!"
I had to ask the nurse what was going on, (at which point I cried), and John caught that. Also, the nurse answered while shuffling me into his room, so he caught the rest too. Apparently that many weeks of that much drugs, plus being on the vent, and all the other stuff has caused understandable confusion. That he knows who I am, who he is, where he is, and why, means he will be fine. (Ends up the nurse speaks from personal experience. She had open-heart surgery too and went through this.)
I hope so, because the specialist that gave him the cuff for his trach so he can talk and sip asked him to tell about himself, and he told a story he believes is real that has about 10% of something resembling reality. The rest is like me suddenly telling everyone here, I'm really from Venus, I have five hands and two feet.
He got two out of four things he really wants today, so it was a two-milestone day, but his confusion is, at best, strange.
The highlight reel version though:
1. JOHN CAN TALK! (He got a cuff for his trach that lets him talk, sip, and eat. (The "eat" part is eventually.) All this time, I thought sipping was his number 1 want, but once he talked, he then burst out crying and said, "I thought I'd never talk again."
2. JOHN SIPPED! Think of the best thing you've ever drank in your life. That ice water was better than that to him He's still only allowed to sip, but, not only does he sip, he holds the glass too.
3. His mind is so confused I didn't even know it was possible to be that confused. I was talking about possible thick soups I could bring in so he can feel full when he eats without haveing to worry about not being able to chew. Then he asked, "Do we have a refrigerator?"
I thought I heard him wrong, but he repeated the same thing. I told him we have two -- a small one upstairs and a regular one in the kitchen. He was surprised like I had just told him we had two Rolls Royces. Then he asked, "Do they fit?" I thought he wanted to know if the soup would fit in the frig. Nope. He wats to know if the frig fits in our house.
So I asked him what he thought our house was. "Three cars." I thought that was an address and I missed part of it, but he repeated that.
I tried to keep my poker face, but he later told me he wanted me to know he's not crazy. He then knew what a refrigerator was. And then asked if we lived in an apartment. "Nope. A rowhome." Again, astonished. "Wow! Two-stories?" "And a basement." "Wow! Cool!"
I had to ask the nurse what was going on, (at which point I cried), and John caught that. Also, the nurse answered while shuffling me into his room, so he caught the rest too. Apparently that many weeks of that much drugs, plus being on the vent, and all the other stuff has caused understandable confusion. That he knows who I am, who he is, where he is, and why, means he will be fine. (Ends up the nurse speaks from personal experience. She had open-heart surgery too and went through this.)
I hope so, because the specialist that gave him the cuff for his trach so he can talk and sip asked him to tell about himself, and he told a story he believes is real that has about 10% of something resembling reality. The rest is like me suddenly telling everyone here, I'm really from Venus, I have five hands and two feet.
He got two out of four things he really wants today, so it was a two-milestone day, but his confusion is, at best, strange.