NEED PRAYER NOW

Depleted · Jan 6, 2016

I just got off the phone with the anesthetist. THAT long. And I called everyone and their supervisor at the hospital just for that. (And I was out and out lied to several times today too.)

According to the anesthetist, he has it written down that I wasn't going to consent until I spoke to my husband's team. (I didn't even know he had a "team." I thought they were mostly just on duty for a particular shift in charge of patients in particular rooms, and the only reason I've met so many over the course of 6.5 weeks is because he's on his fifth room. Yeesh! Again. I can't ask a question if I don't know the question to ask or that there is even a question there.) This morning, at 7:30ish, I told him, (and same guy no less -- Dr. Johnson), that I wanted to ask my husband so HE could consent. Then I'd sign if it was okay with him. 10 AM this morning hubby consented.

Since then, apparently everyone on the floor thought someone else called Dr. Johnson back to let him know, and they were busy setting up several times for that never-happened operation. BUT he didn't get notified, so... (well, the rest of what I wrote today.)

BUT something good came out of this botched mess. Because they so royally screwed this up, I called in that chip -- the ice chip. John is going to have something to drink tonight!!! Yippee!!!!

Honestly? If I didn't get a phone call by 9:30, I was going back to the hospital to camp out in the middle of the floor (or nurse's station. I was leaning toward nurse's station, only because they might have to push a gurney through in the corridor), until I got an answer.

So, prayer requests for the night.

1. This tension, plus hanging out with John for hours the last two days waiting for things to happen that never happened, have made me so incredibly sore. My abdomen hasn't hurt this bad since there was some kind of paperwork mess-up a few years ago and suddenly I couldn't get my pain meds and ran out. I'm also so tense, I have to keep reminding myself my shoulders aren't really earmuffs. (My shoulders go up when tense. The more tense, the higher they go.) Pain meds aren't going to cut it. I need God to do his thing.

2. That John really really gets his drink. Like I said, I've been lied to often today. I believe Dr. Johnson really was told they'd do that for John, but they also told me that John didn't have his operation because the operating rooms were full nonstop for the last 12 hours.

3. Also, today was the day for my brother/Dad's hearing to find my brother to be legally and finally fully Dad's guardian. My brother has called me every time something big happened, but he didn't call today. And I couldn't call him because someone was going to call me "right back." Dad's lawyer promised me she'd bring the name of the social worker to court with her today to put into motion Dad being forced out. She also promised to give my brother all this grand info to help Dad after the last hearing and never did. All this, and I have no idea how it worked out, and am a bit scared that my brother didn't call.

This was the longest, worst waiting-around day for this whole event, ad I'm counting the day John went to the ER only to be whisked away and then later I was told he was having a massive heart attack and chances were slim he'd survive. (Only worst today, because this day of waiting was longer.)

skylove7 · Jan 6, 2016

Praying

God bless you two
Try to get some good sleep tonight Lynn
I will pray you will

Lifting John in prayer tonight
Lord as he heals slowly we thank You God...
And also God I lift Lynn in prayer for her strength through this time, may she have rest and may John rest better tonight
Praise You Jesus
Amen

skylove7 · Jan 6, 2016

Oh...sorry Lynn btw
I was just curious...after all John's been through
I read yesterday how he needs a few teeth pulled
Ouch!
It's a blessing he has come so far, but if you don't mind....I was curious does he have to have tooth extractions?

I pray everyday for you both!
God bless you
Skylove

Depleted · Jan 6, 2016

Got a call back again! Yeesh! They're taking him down for surgery now. (It's 9:30 PM here.) There goes those ice chips again!

Depleted · Jan 6, 2016

skylove7 said:

Yeah, that's what this hurryhurryhurry surgery is -- to remove his teeth so it won't infect his new heart valve. Somewhere between one to all his teeth. (His 68, so not like any of his teeth are still good.)

skylove7 · Jan 6, 2016

Thank you for the update Lynn
Praying

Im just relieved then that yessss....
If the teeth could cause infection, praise God he will get them out tonight and further healing.

Try to rest when you can Lynn
I know its alot but you are blessed!
God loves you
Goodnight!

Depleted · Jan 7, 2016

12 teeth removed. Yikes! That's about it. He doesn't have many, or any left. I guess I should take the toothbrush and toothpaste out of his stocking.

He is stuck breathing out of his mouth. My fear is dry socket. My bigger fear is no one notices.

The pain hasn't left. I wouldn't go in today, but I want two things to happen -- he's going to drink something and I'm getting a TENS unit. (If not mine, another one.) I already put the nurse on notice for both. She said she can't guarantee anything about him drinking, but she'd ask the doctors. I told her to tell the doctors either they do it or I will.

As for the TENS unit? If I don't get that back this pain just keeps getting worse and worse. Add to that, I need to go grocery shopping, because I'm almost out of soda. (Toting cartons of soda will cause even more pain.)

skylove7 · Jan 7, 2016

Good Morning Lynn
Wonderful to hear the surgery went well
Praise God!
At least now you know their will be no infection going to the heart.
You sound tired today
Praying John will rest well today

Patience for the Glory!
Amen Amen!

Depleted · Jan 8, 2016

All of John's teeth are gone, but that's okay. He had two reasons why he wouldn't get denture:
1. Money, and yet Dad sent us enough to cover it before we knew it needed to be covered. Earthly Dad, however, it is definitely both fathers involved in taking care of us. We have enough money to do fine, unless something big happens. (Leaky roof, hot water heater goes -- which went the same day they were fixing the roof -- or our steps fall apart. Each one of these things happened within one week to two months after Dad sends us money, so I'm sure our Father arrange it.)

2. Traditionally, to get full dentures, all the teeth need to be removed, and then the gums have to heal. Healing takes a few months, and John didn't want to be stuck "gumming" real food. (The good food he makes, as compared to say... hospital food? lol) Well, he's not eating any food right now, on pain meds whenever he needs them (and is good about only asking as needed, since he's getting the same kind of pain meds I live on, which he always hated because they make him groggy), and he doesn't even get to get at all, until he hits the point of being able to drink. Gumming food seems so trifle compared to all he has to go through in the next few months, so he's really fine with no teeth.

We've been told four times that if John does X, he can then suck on ice chips. Each time X has been accomplished a new X replaces it. The man seriously wants to drinkwater. I've even been promised, (for brief moments), that today is the day. So, I was really frustrated and did my best to get the doctor to approve drinking water. I finally got to see him. He spent about five to ten minutes explaining ll things trach/bronchial tube/esophagus to me. Drew pictures and everything, all to tell me why it is unwise for John to drink anything until all problems are resolved. I wanted to tell him I just don't want to keep being told by other unit workers only one thing needs to be resolved, when several things needed to be resolved, but the last couple of days caught up with me before I got that far. I had to stop the conversation to sit down. If I didn't sit within a minute, I was going to pass out. (I did go sit, so didn't pass out.)

But something good came of all of this, the Nurse Administrator of the unit called today, after I went to the Patient Advocates office yesterday. I want to know what the long term plans are (besides get healthy and then come home), and to have the folks tell me the real news, not optimism at it's finest. (I am an optimist, so I'll latch to it, if given it in large doses, an then when it doesn't happen, I freak.) Early next week, (because some time next week, unless something else happens, John's going to the VA), I get to meet with the whole team. Even the heart surgeon. (I could have met him before the operation, but he would have had to run up in between patients, which seemed dumb, because I already knew what I needed to know, and he already knew I'd tell him to be extra good, so nothing to say. lol) I'm more relaxed now.

And John's PT had John do something today, I didn't think he'd get to for a while. He and another guy had John sit on his bed with his feet on the floor for five minutes. The PT told John it would be hard, and John did what he does best. Joked. John smiled and pointed to his eye. The PT got it. John suggested he watch the PT sit for five minutes instead. lol

Most of the staying up part was done by the PT and coworker, but John lifted his right arm higher than I thought he could do that. (I kept quiet. It's possible for me to do that sometimes, if you're wondering. lol) And he lifted up his legs two out of five time by himself. He had trouble keeping his head up, but he kept trying. I can't believe how proud I am of him for doing something so common. That feels like the first step to normal to me.

Right after that, the PT set his bed in the sit position. I thought John was fine in that position, and I'm still utterly exhausted, so I told him I'll be taking tomorrow off, including not coming in to visit him. (I hate doing that, but when I can't do it anymore, I just can't.) He mouthed many things to me, but only three things did I understand. (He wanted the compression boots off his feet. "Never mind." That's what he says when he tries several times, but I still don't get it. And the most important one -- "Wait with me.") He wanted me to stay as long as he had to sit up in bed. I thought the chair made him nervous, but sitting up in bed does too.

Fortunately, 15 minutes later, a nurse or technician came in to remove staples from places no man EVER wants staples. When they add that bypass pump to his groin, the really meant groin. I thought upper thighs. Was asked to leave, and ran into a pigeon who thinks he can bully me for more food. He attacked my shoes. lol And ihe shoes attacked back. No kicking was involved.

When I returned he was in the sitting position anymore. He saw me when I had to sit down and know when passout is coming sit is the answer. At least the Tens unit is back -- he PT put it in a closet for safe keeping. I usually pick the worse muscles an use it on there. I had to use it twice to get any help. But, awww, back to just an aera bad day. Back is reasonable now.

Heard how Dad's case went. He's in a rehab straight from court. I hope he's angry, not shut down.

Brother is feeling bad. It's the right way to go, but it doesn't make anyone feel better.

skylove7 · Jan 8, 2016

Amen!
John sat up today!
Praying for his drink of water
Lol now Lynn tomorrow you watch them give him his ice, when you're home exhausted zonked out!
Isn't that the way it goes lol
And here you have waited for his drink days now.

Praying for John
And you get some sleep tomorrow!
Sleep in as late as you can
You need to rest to be strong for John

God bless you both!
Sleep sweet

Pilkington · Jan 8, 2016

Just wanted to say I am still praying, for you and John. I know how frustrating when the communication is bad or they appear to be lieing. Heavenly Father, I pray for Lynn, may you give her strength to keep going and help her get the rest she needs and I pray that John continues to make improvements and that he is allowed to drink soon. Help the staff to be honest, get their facts right and that the lines of communication would improve. In the name of Jesus. Amen

Depleted · Jan 8, 2016

I had a wonderful day most of the day. I even took a nap. Wow! Nap! I forgot how wonderful they are when not worked around everything else I have to do. lol

And then at 5 PM on a Friday night, I got a recording from my pain management doctor. My appointment is on Tuesday. (I thought it was the 21st, not the 12th.) I don't have my referral yet. And trying to get through to my primary's office -- who doesn't work on weekends -- is about as easy as trying to call a friend with a landline and quintuplet teenage girls! The number is always busy.

And then right after I put the water on for pasta, my brother called with the details about Dad. Heartbreaking and miraculous. (Got an Answered Prayer post about some of it.) By the time we were done talking, the water for the pasta was almost gone. lol

I got wound up with the amount of stuff I have to get done before Monday to have time to deal with that doctor's appointment, but got back to relaxing around 9. Now it's bedtime.

I will always feel guilty when I'm not there for John, but if I don't do this once in awhile, I'll get to the point that I won't be able to ever go. Nighty night.

Pilkington · Jan 9, 2016

Praise God, you will get all the stuff you need to get done.

I totally understand the feeling guilty when you are not with your husband and they are in hospital. No where near the length of time you had to deal with or as serious but 2 1/2 years ago my husband was in hospital for 8 days, home for six and then back in for 18. I can remember having to struggle to juggle everything, what with a husband in hospital and our six year old son. I learnt to accept help, friends from Church had our son so I could visit my husband etc. people did shopping cooked meals etc. I felt guilty about not being with husband and not being with our son particularly as it was school summer holidays.

Continuing to pray for you and that you will take time for yourself and be able to get the balance right.

Depleted · Jan 9, 2016

Pilkington said:

Eeek! With a a six year old! As often as I've had to have some personal freak time, (which usually happens about the time I'm taking off my coat and shoes when I come home), I have no idea how anyone can pull this off without terrifying their kids. (I've actually been glad that I don't have to be strong for anyone but John.)

happyface · Jan 9, 2016

HI Lynn, Been reading your posts and hopefully you will get alot of rest. Its awful how it takes it out of you. I understand. Well Im thinking about you, prayers are with you. Its a wonderful thing how God keep us going. I myself have been looking into getting a new scooter battery, and I priced them up. I have realized my feet are really bad, and that I need to be more out going, pray that the doc takes me seriously tomorrow on sunday. I really am praying for you, it seems there is progress with your husband so hang on in there Lynn. Im really inspired by you lynn. Lots of Love Mandy xx

Pilkington · Jan 9, 2016

Depleted said:

God was very gracious to us as a family. I did freak out just when our son was not there. I can remember crying out to God and saying I don't know how I am going to deal with this, I need your strength. Our son knew Daddy was ill, maybe not the extent but he was aware, he was aware that people loved and cared for him and that God loved and cared for him. We are blessed with a very well adjusted child who enjoys being round people and he really enjoyed that summer. Children are remarkable resislient. No matter how hard things get when we trust God he gives us the strength to cope. Yes I can remember getting angry with the hospital but without God and the support of my fellow believers I would not have been able to cope.

Depleted · Jan 9, 2016

happyface said:

The doctor must be taking you seriously. I never heard of a doctor that works on Sunday except in hospitals seeing patients stuck in there.

I wouldn't worry about being outgoing now. There's "need to be done" and "want to be done." When dealing with big problems, only work on needs. Wants can wait! Being outgoing is only a want. (And this from someone who wonders if I might be allergic to having patience. lol)

Depleted · Jan 9, 2016

It's a very good day!

1. John's temp and white blood cell count are normal.

2. His mouth stopped bleeding. (I keep thinking the first taste he had after over six weeks was blood in his mouth.)

3. He's been trying to say the same thing to me for weeks. All I got was "B" as the beginning letter of a sentence, but he kept telling me it wasn't a B. Today he was strong enough to point it out on the letter chart. P. P! The letter P. The biggest worry he's had for weeks, "Pain pills get!" Not him. (He gets all the pain meds he wants.) His biggest worry was how I was doing with my pain pills.

About once every two years, something happens, that causes me to fall short. (Health insurance didn't like that Darvocet helped my migraines when nothing else works, but oxycodone -- 5 ml. 3-4 times a day -- helped my waistline pain, so after getting the prescription for the Darvocet, they denied the oxycodone. After that, I bought the Darvocet off the medical plan and haven't used it up since. Darvocet was taken off the market 2-3 years ago, so I really don't take it often. I live on the oxycodone. I also ran out half a day before I convinced the insurance company to change their minds. Next time, someone on the federal level started prosecuting doctors for prescribing pain pills, so my doctor stopped writing the prescriptions. Then my next doctor insisted I go to a pain specialist for that, and only gave me a month supply to last me until then. The pain specialist appointment was five weeks away. And the last time, my pain specialist gave me two prescriptions, so I asked the pharmacy if they minded holding on to the second prescription until I needed it. They didn't mind. They did that all the time, except when I went to get it filled, suddenly they lost the prescription. I had to rush an appointment to see the pain doctor. So, to combat this, every time I can make it without a fourth pill, I do. I keep doing that until I have a spare month of pills. BUT, if I do stuff that causes extra pain -- like standing or sitting up for more than 90 minutes, as in go visit John -- I sometimes do five per day. I had two months hoarded when John had his heart attacks. Now I'm down to half a month, but Tuesday is my next appointment with my pain specialist. The only fear I have is I gave the prescription to the pharmacy two days before John's heart attack, but they were low, so couldn't refill it immediately. I told them I was good until I could pick it up, not knowing I wouldn't be picking it up until the end of the month. I can only get it every 30 days. They don't mind refilling it after more days than that, but they won't refill if it's only 29 days or less later. What I have now has to last me until the 30th. So, I told John I was fine with my pain pills, but skipped the part where I might not be later this month.) I do think it's sweet that his biggest worry was about me though. Funny. I've been so worried about him, it never dawned on me his first sentence would be about me.

The only bad thing that happened today was when he was on the trach collar, (which means he's off the ventilator pumping his lungs), he couldn't get enough oxygen. He was only off the ventilator for 15 minutes, before his oxygen levels lowered too much. (I hope that doesn't scare him. The biggest reason he finally went to the ER was he felt like he was suffocating, even though he was gasping as hard as possible. Ends up, he was suffocating. He could breathe, but oxygen wasn't being picked up to go through his blood.) While I was visiting him, the respiratory therapist gave him a ventilator equivalent to a dose from an inhaler. The plan was for him to try again, but John was in enough pain to want pain meds. Once the pain meds kick in, he sleeps. I don't know if he can do vent collar while sleeping.

Oh, funny story. John has had one nurse more often than any other nurse since Christmas. He's the same nurse who put him on the chair that first time, when John's back spasmed. Once I realized it was his back spasming, I convinced that nurse to get him out of that chair and back into that bed quickly. Before I figured it out, the nurse kept saying things like, "Yes, it's uncomfortable, but you can make it a bit longer, right?" And then he didn't wait for John to shake his head to say that's not right. He's also the nurse that promised pain meds, but then took an hour to get around to asking someone if it was okay that John got them. (I had to ask twice, before John got his meds.) John flipped the bird at nurse that day. BUT, he's also the nurse that found out what happened to my TENS unit, so I told John he was okay with me now. John disagreed. Then (through Yes and No questions), I found out the guy was still doing the same kind of things to John. While the nurse was busy preparing his pain meds, John was making faces at him. I may not be able to read his lips but I get his faces. He was mock laughing at the nurse, then sneering, mock laughing, and sneering. Translations: "Yeah, you're all chipper and don't listen, but I remember, and won't ever like you."

At least I know John can let out his emotions without talking. And now he can point to letters to tell me stuff.

Depleted · Jan 10, 2016

Here's a problem I can only see God resolving.

John has a bed wound. (Something that size is no mere "sore.") It was caused by turning him and readjusting him every two hours for 6 weeks. (And if they didn't do that, he'd be one big sore, so I do understand there really was no other choice up until we do create a way of keeping a patient floating in air for weeks.) He's a tall guy, so every time his bed was shifted sideways or pillows/wedges put under him, he headed to the foot of the bed in tiny increments. That caused "sheering." Sort of like a rug burn done very slowly.

To let it heal, he has to get out of bed. He can't sit or walk on his own yet, so that means hoist him into a chair. The bed causes the problem. The chair causes excruciating pain. (Two nurses told me he can take pain better than any patient they've ever had, and yet that move does him in.) And he knows this, but the chair makes him sob. (Worse yet. I know what he looks like when he's crying, but he doesn't tear. Usually his shoulders shake with the sobs, but now he doesn't have the ability to shake at all, so it looks like he's so hot his head is red. No one can tell he's crying but me, and he hates to cry, so I'm uncomfortable telling anyone, "that's sobbing.") Who is telling the nurses to put him back in bed, if I'm not there when they decide to move him? (And moving him takes 15 minutes.)

I don't know what to do. The wound will still be there in three months. It's that bad. He can't sit, but he can't lie down either. I feel like I'm giving him a choice between 40 lashes or being keelhauled.

And the nurses know this, but there is nothing they can do to make it less painful, except put him in the place that caused it. Even pain meds don't do it for him -- not for that kind of pain.

Magenta · Jan 11, 2016

I will try to be more vigilant in including you in my prayers, and to bring you and
John to mind when I am praying or asking for prayers from others for others.

NEED PRAYER NOW

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