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Depleted · Mar 16, 2016

Now, the rehab center has a different story than the hospital, but I'm choosing the best of both sides of this story.

Hospital says John doesn't have an duodenal ulcer. (I have the report with the "pretty" pictures of his digestive system, and lots of medicalese that I translated when I got the report, and it really doesn't say anything related to ulcer, so I'm going with the hospital's version.)

BUT the hospital also says he was on two blood thinners until the Warfarin was raised to the right dosage, and then he was supposed to go off the other med. No one ever took him off the other med, so he has too much blood thinner in him. (This seems reasonable because he was transferred right around that time, and I have no doubt that kind of info doesn't get passed along.)

Soooo, less blood thinner, thus less bleeding.

AND (this is the Yippee news), he is only supposed to be on blood thinners for three months after they put his valve in. His three month anniversary is March 23, so that's the day he no longer -- ever-ever -- needs blood thinners! That means he should stop getting nose bleeds, he can get his fingernails cut without worrying about nicking him, (someone in the rehab started trimming his fingernails but nicked his pinky. Such a small nick he didn't even feel it, and yet he bled copious amounts for eight hours, and then his wound-care nurse was the only one who could stop the bleeding. That was a week ago, and he's down to a bandaid -- plaster, if you speak British English -- that everyone is afraid to take off because it starts bleeding again. The wound nurse stopped the blood flow, but to do that his whole pinky was wrapped in four inches of bandages and then his hand was wrapped tight to slow the flow into his pinky), and his entire arm/stomach/fingers won't be severely bruised whenever he gets a needle. (They gave up giving him needles in his arm when his entire upper arm -- from elbow to shoulder -- was so bruised, he looked like he was mugged a minute ago for three days, then he looked like he was mugged recently for 2-3 weeks. BUT they started giving him that same needle in his stomach, and that has a string of bruises from left to right, that looks like someone poked him so hard it bruised. I guess the idea is no one can see the bruises, so that doesn't count quite as much.)

March 23rd, the day we start not having to worry about every poke, prod, nick, or internal bleeders -- a day that will always be a good memory for us.

They're saying he goes back to rehab after he's stabilized again, but in the last 24 hours, he's had three pints of blood. At least we know it will be before the end of the month.

But, still have a new prayer requests for John. Let's call it "The ins and outs of the digestive system." His feed tube to his stomach has been blocked since after his first feeding this morning. They're using all sorts of methods to unplug it, but I had to leave at 2 PM, and as of that time, he hasn't had food since 6 AM. They have "clog busters" they plan to use next. (Bust clogs in the tube, not in his digestive system.) If that doesn't work, (and they assure us it will, but they assured us that the two things they tried doing before that would work too), they'll have to get him a new tube. He says that doesn't hurt, but I don't know if it is doable without causing him to bleed again. (One of the three tubes he's had so far caused stomach bleeding.)

And, then there is "out." IF he knows he has to go, (6 AM breakfast has to leave eventually), he doesn't have much time between need and going. A nurse has to come in in time to do a bedpan. Rarely are they successful. He can't get up to go to the bathroom. (Guess what's left for him to do in this scenario.) I was there for FOUR hours trying to give him the little dignity a diaper would give him. The best I could do was get the medical student to try and talk the wound care people into doing that. The wound care people don't want a diaper because moisture collects. What do they think that stuff that comes out of him is -- if not "moist?" And, hello? Where's it going but near THAT wound? The wound care people may change their mind when they come to see him. They won't come to see him until after he's fed, and they might not come at all today. Anyone for "holding it in" for 24-36 hours?

So an in and out problem. What ever happened to a little dignity, especially when it is such little dignity?

Miri · Mar 16, 2016

Hi Lyn wow, what a journey, it's like Chinese whispers. Oh and yes
we use plasters (band aid).

Still praying especially that the battle will swing in your favour permenantly
and that you will both know what it means to know the joy of the Lord and
his strength. I wonder if John knows how many are praying for your both and
that neither of you are alone in this.

Depleted · Mar 16, 2016

Miri said:

Hearing that people are praying encourages him, so yes, he knows a lot. (I don't know how many other than this isn't the only place I'm asking prayers.) One friend says he has a "fan club" in Virginia. They have a prayer group that meets every Wednesday night, and the first thing everyone wants to now is how John's doing this week.

He called at 6. They finally worked out the clog in his eed tube, so he got his second meal of the day. He can't feel it at all -- no taste, no filled-tummy feeling, no belches, no hint he is getting calories unless he gets sick. So psychologically not eating didn't bother him. That that hospital is so screwed up and does stuff like this to him constantly really does bother him. He was so utterly depressed when I saw him. The thing that cheered him up is knowing he gets off the blood thinners next week, so it is likely he won't be stuck in that hellhole long.

Oh, and after he's fed, they were going to work on his wound again. (That which hurts the most, so it is something like looking forward to root canal for all your teeth at once without any thing to numb the mouth.) AND, after that, they're going to move him to another room.

The last time he was in this hopsital, on a Saturday, they decided to change his room. It didn't last long because the first thing he noticed was no lift, so no way to get him out of bed. They screwed around enough with him a couple of weeks before so he coudn't get any PT and I wasn't going to let that happen twice, since he loses ground without it, so he was only in the new room for a few hours. Meanwhile, because of his bedsore, he is always on an inflatable mattress that adjusts to his movements. When they moved him into the new room, a sound blared. The nurses thought it was a smoke detector at first. (That kind of sound.) It took them a few minutes to relize his bed wasn't plugged in and they did something.

Then they left the room and the sound went off again. I went out and asked one of the nurses to shoot the bed. (I hate loud sounds! Unnerves me.) She came in and turned off the bewd, but we didn't know. Within 15 minutes John went from managable pain (about a 5) to crying pain -- a 10. "unrelenting. I went out to get some pain meds for him, but that okk 1 minutes. And then another 30 minutes before it worked. They also make him drowsy, so I left so he could take a nap.. Later on, he called home to tel me the cause. She turned off the bed. No air mattress!

This time they put him in an air-mattressless bed. He knew not to put up with that, so they brought him one -- a new one. (Apparently its okay to crap on the new bed. Woohoo! Be forewarned if you ever get stuck on one.) His room also doesn't have lifts. So they might be putting him in a room with a lift. OR they might just be doing this for the hell of it. There is seldom logic in anything they pd. But, again, I don't know where my husband is.

Four hours to talk to a doctor and I never did. Tomorrow I will, even if I had to toss poopy sheets right where visitors and staff walk by.

pickles · Mar 17, 2016

Continuing to pray in Jesus.

Hugs and God bless
pickles

Ariel82 · Mar 17, 2016

Dear Lord we lift up Lynn and John, encompass them with your love and peace and surround them with people who are filled with Your Holy Spirit. in Jesus name we pray, amen.

Depleted · Mar 17, 2016

Last night he got fed, then he got his wound care, then moved. Fortunately, his two favorite nurses moved him, so no complications with beds during the move.

And easy to find out where he moved to, because the same nurse he had yesterday answered to phone. (Poor guy. His shift was 7-7, but since John needed help with wound care and then the move, the nurse didn't leave until 10. He started his 12-hour shift today back at 7.) Thanks to a traffic jam, I didn't get there until 11. (Or 10, since the clock in his room is still on standard time. lol Battery operated, so I fixed it.) He hadn't been fed yet. He buzzed his nurse at 11:30, and she came in and looked at his feed bags while he told her he hadn't been fed yet. Half an hour later, I'm off to grab a soda and cig. When I come back, he tells me his doctor was in to see him. He should be going back to the rehab "as early as possible tomorrow." (In hospital talk that means any time between 9 AM and 6 PM.) His blood is officially at the levels it's supposed to be (on one blood thinner.) So, he told her he hadn't been fed. She'd talk to the nurse on the way out.

Half an hour later, a nurse comes in to feed him. As she's there when the nurse that came in earlier and looked at his feed bags, came back to check on his antibiotics. (IV going for 2.5 hours, and it should have taken half an hour, but, hey, she kept checking and wondering why it was taking so long, so good for her.) It really doesn't take long to stick a tube into someone's feed tube, so the nurse who set up John's feeding only took about 1-2 minutes and left.

And then the "brilliant nurse" who saw John had feedbags, tells John he's going to be moved today. Something about the outside maintenance people need to fix something in the room, and they get paid if they can or can't do the work.

I ask her why they didn't know this was happening tomorrow considering John was placed in that room late last night. She did a lot of talking, but made little sense. Something about patients on the 6th floor (where John was yesterday and where he was for sic weeks in January through the beginning of March) need heart monitors if they come in as a heart patient, and only the sixth floor has them. (Um, John is a heart patient, came from the sixth floor and never had a heart monitor there, so it made little sense other than that was her excuse why he was put on the fifth floor last night. Notice, that's not what I asked.) And then she tells him he can't be fed through the mouth so needs to be fed through the stomach.

Whoa! Really? How have we survived this long without knowing this?

(John's quietly fuming, but we are holding it in. Except the curtain is drawn between his bed and the door, the nurses have to put on sterile coverings to see him, and then take them off and throw them away in the trash can near the door. I had to signal John to not let loose, because she's taking off the outfit just as he's starting. I'm not against him letting loose. I'd love to join in, but he just wants to get out of there. It's a nightmare. So bad, he had a nightmare last night that he got stuck there permanently and couldn't get out.) But, hey. That's why she never bothered to feed him. She looked at the feed bags and still thought he was magically eating on his own.

So as of 1 PM today, although he's supposed to be fed three times a day, he has been fed three times in two days.

And, he said, if it was physically possible he would have shoved his dirty sheets in the face of the wound care specialist who decided he didn't need to have diapers. (I told him I wanted to take them to her office door and dump them right in the hallway there.) Instead, his favorite nurse had to clean him up twice yesterday. How is that for a sucko 12-hour shift that turned into a 15-hour shift?

So tomorrow morning I have to find out where he is AGAIN and when he's going back to rehab to see where, when, or if, I can visit him.

He likes his window at the rehab. There's a tree outside that seems to be the pick-up bar for robins. It's springtime, so he's been watching robin courtship rituals. That's so different then what we get at home and so not-related-to-medical-anything, I really like hearing he's got a new pastime. (I'm praying a robin family settles into the tree which mates have been found, although, how well can he see what's going on when the leaves come?)

Please pray he really gets back to rehab tomorrow. The in-patent care in regular units in this hospital is the posterchild for incompetence mostly. It plummets his spirits and doesn't do mine any good.

(He did have his PT and OT come to visit him. They like him so much, they were going to visit him in the rehab. He lost a sponge he uses to strengthen his hand while being moved to the hospital, so I called for a replacement, which quickly escalated to all the therapists knowing he was back. That's how nice he is. Just so you get, his wife is the not-so-nice one in the family.)

Depleted · Mar 20, 2016

Quick update: John got back to rehab on Friday. Whew!

chancer · Mar 20, 2016

JesusLives said:

Lord we just thank you, that ur able to do this, bring healing and bless our sister strength and peace, in Jesus name.

Christwill · Mar 21, 2016

Almighty God Jesus Christ, Its a Prayer to Lynn's husband, God heal him and cure him from all health problem. God bless the family and give the peace. Amen

Miri · Mar 21, 2016

Great to hear things are still moving forward for you both.

Onward and upward

Ariel82 · Mar 21, 2016

Lord continue to bless Lynn and John, surround them with Your love and people filled with Your Holy Spirit. God heal their bodies, mind and hearts to do Your will in this world. Open their eyes and hearts to remember Your many blessings and help them to be the people You have created them to be. Make straight their paths so they might always walk in Your light and truth and bless them that their words might be like living waters to all they meet. In Jesus name we pray amen.

happyface · Mar 22, 2016

Lord keep bringing them forward, as I know you can carry our burdens, so that they become light again. Be with them both. Amen

chancer · Mar 22, 2016

Praying ......

Depleted · Mar 22, 2016

Amazing the difference in progress when we have enough blood in us!

I went to see John yesterday at 11:30 AM. He had already been to PT and stood -- THREE TIMES! What was his torture chair is now bearable. He sat for an hour without going off the deep end toward pain! With this much progress despite a whole week without PT, his staff sees him pivoting into his chair on his own by the end of the week. (I'm not so sure, simply because that requires sliding on his bed wound.) No more need for a lift to get him to his chair. They see him getting his swallow test soon. (The whole reason he can't yet is because it's done on a chair with no padding, it takes 1-1.5 hours, and his bedsore is on his hind cheek to make that ridiculously painful.)

I was there when his bedsore was worked on. Since my best-case-scenario image was terrible looking, this time I wanted to see the reality. It had nothing to do with the images in my mind. It is both worse than I imagined and much better than I imagined. But I imagined a huge piece of filet mignon with nothing but what comes on the skin after scrapping my knee but before the scab forms. It's not that. There is no skin, so I can see deep into his cheek, but everything is so clean there is no blood. Better yet, no infection! I saw a layer of something halfway down that looked like skin. When the nurse said it went through his tendons later, I realized that was a tendon. It looks like he was stabbed by a handheld tomato grinder -- deep! At least 4 inches deep. Possibly 6 inches. I had no idea there was that much flesh between our skin on our hind cheek and the bone. (I had no idea we have tendons on our bottoms. lol) I didn't see the bone, but only because it's twisting on the bottom, so couldn't see that deep. But it's twisting on the bottom because the wound heals from the bottom up.

His trach hole was only about half an inch deep. It's almost healed. This looks like it will be months before it even looks merely like an old wound. Longer to look like a cheek again. But it is healing!

No lawyer got back to us about the lawsuit, but I talked to him about what he really wants. He thinks someone should pay for the damage and he is forever worried on how much rehab will cost us by the time he comes home. (Free at the VA rehab, but that's only 90 days. He'll need much more than that.)

So, I talked to him about getting what we really wants without taking it to court. My plan is to bypass the top tier of that hospital, bypass the lawyers, and see the director of rehab. (The Director is middle management.) Without his bedsore, he would have been in rehab getting better back in the beginning of February. Because of the bedsore, he's just getting to the point of gaining with rehab. He still has the bedsore to deal with. (Without it, they would have started teaching him to sit first, and then stand. He can't sit!)

So pray the Director will meet with me so I can present our case. I'd like them to rehab him at their in-house rehab center. That's all he wants -- to not worry about the finances we will incur because of the bedsore they gave him. It's certainly cheaper than using lawyers -- win or lose -- on their end. We're not out for revenge. We want fair.

Depleted · Mar 22, 2016

And after I wrote that, I went upstairs to get dressed to go see him.

And then I rushed downstairs because the phone was ringing.

John. His blood is too low, so back to the hospital.

SCREAAAAAAAAAAAAAAAAAMMMMMMMMMMMMMMMMMMMMMMMMMMMM!

skylove7 · Mar 22, 2016

Continuing daily prayers for John
In Jesus name
Amen

Depleted · Mar 23, 2016

So, anywhooooooo! (Hey! I honestly had to wait by the phone for seven hours waiting to find out where he'd be tonight before going to see him.)

Hubby got a refill on the blood. Very odd. In the VA hospital the doctors kept telling us that as long as he was at 700 or greater, his blood was at acceptable levels. BUT, at the VA nursing home/rehab, he went down to 701, and suddenly he had to go to the hospital to get blood. Not just one pint. Two! Same hospital that told us 700 was acceptable last month and last week now shows 700 required two pints of blood! Can anyone explain the logic behind that one at all? It completely escapes me.

But they're now saying the blood is seeping out of his wound, which, yeah! Of course it is. The wound vac prooves that by showing us the goop coming out, and it is tinted blood red, and gets emptied when a pint of it comes out.

Sooo, traditionally, for a man who got a new part to his heart, (a valve), he is supposed to get blood thinners for 90 days after the part is put in. The part was put in on December 23rd. BUT, when he was transferred back to the VA on January 13th, (I have a weird memory for specific dates), the first cardiologist to check him then said he had "a flutter" in his heart, so recommended six months of blood thinner. And then there is that wound. And because of that wound and the blood thinner, he keeps losing blood and needs refills.

Soooo, his doctor at the rehab is checking with cardiologist on what he thinks now with this history. (By now, John has had at least 40 pints of blood, and I'm only counting the ones I remember, because I was actually visiting him when he was getting it, or was told by someone he got some. They tended not to tell me everything that happened when I wasn't there in the beginning. For instance, they forgot to tell me HIS KIDNEYS COMPLETELY SHUT DOWN until after they started working again.)

The problem is no one is really into follow-thru. If the cardiologist never returns the phone call, the doctor won't think to call back to nag. AND, I keep fearing I'm pressing my luck on being allowed to even see John if I keep nagging people to nag other people. (They think I'm wonderful, because I "advocate," but yet, they try to avoid me so they don't have to, so I am catching I'm not really all that wonderful to them. I make them work harder than they absolutely have to. Add to that, I keep reminding John he's allowed to say No. Like, "No, I'm not getting my finger pricked every hour with a dull pick that bruises every fingertip, just so you make sure my insulin levels are the same, even knowing they've been at perfect levels ever since I CAN'T EAT" kind of ideas. Very dangerous stuff to mess with doctors who confuse themselves thinking they're gods. Sarcastic? Moi?)

I've been trying to organize a good nag secession... errr, I mean trying to get the doctors and nurses to do their jobs according to John's schedule, not their schedule. You don't keep a man up until midnight - 1 AM just to take some vitals then, and then expect him to wake up at 5 AM just for more blood drawers (now taken out of his elbow, because some nurse get's it in her mind she feels like replacing a pick after two days, just because she can and it's 3 AM anyway, so nothing else is happening.) And you don't rip off a very sensitive and painful wound right before forcing the patient into sitting in a chair for an hour and going down to PT. It hurts. It hurts like hell. He needs the rest of the day to recover from that level of ripped off raw. So I want them to come up with a schedule for John that stops guaranteeing he cannot get PT, because the main reason he is there is PT. And with this extra stuff with needing blood, he's missed five days out of the last seven days. It'd a rehab. Without rehab, hes just stuck lying in mbe for no goo reason!The problem is everyone thinks their job is the most important job, except to help John get better.

But I tried gathering them on Monday, but the wound doctor camt that was blown away. Today was pet getting blood so he wasn't even there, Maybe tomorrow.

Ariel82 · Mar 23, 2016

The wound healing is higher priority than PT in a medical standpoint.

Depleted · Mar 23, 2016

A shocking thing happened. (In a good news kind of way.) I said I wanted to make an appointment to plead John's case to the head of HUP's rehab in a face-to-face meeting. Well, yesterday I finally reached his right-hand man, who left my message for the Director. About an hour ago, the Director called me. (I really thought he wouldn't.)

Instead of face-to-face, I ended up telling him what we'd like. It took him a little while to figure out I'm not asking for this immediately. I'd like John to stay where he is for his 90 days. Once the Director got that far, he asked me for the number for John's doctor. He's going to look into it. Whoa!

Could it be he is willing to do what is fair? I'm thanking God the man didn't just refuse on legal grounds.

And, because that's just not enough good news, John is now able to do something I've been hoping he could do for the longest time -- he can lie on his side comfortable. (He's been able to pull himself up to his side when needed, for quite sometime, but it's even more work to get in a comfortable position to stay there then it seems.) He's woken up like that a couple of times, and then took a two hour nap today like that. The one thing that's hard to do is to talk on the phone in that position. We're not much for phone talking anyway, so that's fine.

AND, he's been reading the Bible again. He's picked Psalms, but since he can't take study notes to remind himself what he learned, he reads a Psalm a day -- three times in the day to remember it better. That's what that makes me feel everything will be all right.

Ariel82 · Mar 23, 2016

Praise God.

NEED PRAYER NOW

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