Saturday already???

Life is a blurr. It's all so busy, so frantic, so hectic. So incredibly frustrating. He stopped his oxycodine and went to 4 ES Tylenol every 4 hours. Of course, the nurse went ballistic. She called me last night and told ME to google how much he could have? Well, of course, I can find that 4G for an adult in 24 hours is the max.....but what about an adult in kidney failure? Why am I the one doing the googling? She is the RN!!! I finally quit after getting so frustrated with the whole concept of me doing her job!

The clinic nurse called yesterday and gave me the number to call nephrology. I called them and they can't see him til April 1??? I said, do you know why he needs to be seen? She said, it's a regular follow up appointment. I said, "NO!" and explained what he's been through. They had not received any faxes from the hospital, have no idea what is going on.

So I called the hospital case manager. Friday afternoon. Not in. Left a message.

Called the clinic nurse and told her what happened. She will call her liaison at the hospital, but since it's Friday afternoon, she asked me to call her back on Monday to see where we are.

I swear....once again....the burden of tracking and following up is on me.

What if I don't do it? What if we just wait until April 1 to go to nephrology? I'm certain that his kidney function will have decreased enough that he will need dialysis by then.....especially if he continues with the high does of tylenol.

The oxycodine puts him completely out. Unable to wake up to go to the bathroom. But if he can't take tylenol....what else is there? Vicadin, Darvocet....all those,make him sick to his stomach.

I taught art classes last night. I was gone for 6 hours. He failed to write down his glucose, failed to write down how much insulin he gave himself.....just didn't chart anything.

And it got me to thinking.....does he simply want to die? I cannot stay home with him 24/7. I just can't. I need to have contact with the outside world. So I'm teaching an art class one day a week. I know he does not want me to leave. Even if my sister is here. And I had told her to act like she wasn't here so we could see how he would do on his own.

I am really tired of being the only person who seems to want to take care of him. I may give it up. I may just quit. If he does go back into the hosptial, I already know that I will not do what I did this last time. I will not chart. I will not be there 24/7. And I have told him this. He knows that if he goes back into the hospital, I will not be there every step of the way. We got him home...now it is his job to keep himself at home.

Of course, he says he is not going back into the hospital. But I know the moment they tell him he has to go, he will. And honestly, I'm too tired.

So many other things going on that are so much worse than what I am dealing with and that helps me. But so sad. My sister-in-law's mom who is about my age had surgery yesterday to remove multiple brain tumors and they give her very little chance of surviving. My best friend from my childhood had a grandson born 2 days ago and he is on a ventilator and needs a heart operation that has very very little chance of survival. Her dad was in the hospital and walked out. Her mom is ill. They are both in their mid 80s and she is taking care of them. Another childhood friend is going in for surgery to have a recurring tumor removed from her spinal column. So...see, I really don't have it so bad, do I?

I think that when you can look outside what is going on in your own life and figure out that there are others who are much worse off than you are, it give some meaning to what you are doing, some purpose. I also know that no matter what happens here.....I will be ok.

DW

So dang tired!

Bless my sis - she's back helping out. Home Health Care is in place. The nurse can draw labs here and drop them off at the clinic. Pt came today and will be back Friday. Ot is coming tomorrow. They are supposed to schedule a CNA to help bathe him, but I haven't heard back so will call the nurse tomorrow and see where we are on that. Wheelchair here and ramps in place.

Schedule:

7 am, up, toilet, insulin, breakfast
8 am, walk, do exercises, then clean clothes, teeth, etc.
10 am, walk, exercises, sit in chair for 30 min, test glucose
12 noon, same as 10 am, plus lunch
2 pm, same as 10 am
4 pm, same as 10 am
6 pm, same as noon
8 pm, same as 10 am

So, we are exercising, walking, testing glucose, every 2 hours during the day.

At night, I set my alarm and wake him up to go to the bathroom at 11 pm, and 3 am.

I think I may just die. I am so tired. I catch little naps whenever he sleeps. I know we have to dothis in order to get him some strength back. The PT said today that for every day you are in a bed in a hospital, it takes 3 days to build back the muscle lost. So he was in bed for 21 days, this will take us 63 days. Two months of this schedule? Tonight, this moment, I'm not sure I will survive I'm so incredibly tired.

Some of the things you don't think about when something like this happens.....bills. I haven't even looked at one in 3 1/2 weeks. They are simply piling up on his desk. Every day I tell myself that I will start in on them "tomorrow". I think I'll really have to do it tomorrow.

But then I just don't care. Nothing matters except getting him back to some reasonable sense of health.

They cut his humulin to 9 units in the morning and 9 units at night. He is still going low a couple of times a day and stayin high way too much of the time He's just not eating what he used to eat, continuing to lose weight. We had to "train" the home health nurse about his specific type of insulin. In 40 years of nursing, she had never heard of it!!! Needless to say, I'm tired of training nurses! I should be getting paid for this!

I realized there are certain sets/groups of friends that I've forgotten to update on hubby's condition. Now I'm playing catch up with that.

I haven't had a moment to clean the house in the last month. No one's been here to get it dirty, so it's ok. But I know the cobwebs are going to grow soon!

We only have a half bath on the main floor. All that was in it was a toilet and sink. Now, I have added a storage unit over the toilet to store depends and bed pads. I bought a small shelf to put on the side under the sink to hold bathroom stuff, toothpaste, soap, etc. Got an over the door towel holder and hung a paper towel rack. We have a raised toilet seat and I found bars that fit under it that will help him get up and down. So this tiny bathroom has now been modified to serve as his "primary" bathroom. I've put 409, febreeze, windex on top of the shelf over the toilet as cleaning it has become a daily task in order to eliminate smells.

Finding adult wipes....interesting.

I did find some bathroom wet wipes that you heat in a microwave and he can bathe with them. He is just going to have to have a sponge bath tomorrow. It's been almost a week since he had a shower at the hospital.

Truly worried about his kidney function.

Need time to play...but that's going to have to wait.

All I need right now is for 5 feet of snow to fall! LOLOL!!!

He had another hard day. He tried to insert his contacts and I told him not to do it. He scratched his eye. So he's been sleeping most of the day with a patch on is eye. Why on earth does he still refuse to listen to me??? So I took his contacts away and will not give them to him for 48 hours.

My sis and I are watching a movie, trying to unwind and relax. We did get groceries today and another friend brought in a cassarole. I'm praying that I get a few hours of sleep tonight and that tomorrow is better.

DW

the little things no one tells you......

After spinal fusion surgery, you cannot lift, bend, or twist. No big deal. Unless you weigh 250 pounds and cannot reach over your belly to wipe your butt when you have a bowel movement.

A tiny little thing that EVERYONE forgot to mention! So I went online, researched, found a category titled "toilet aids" and have ordered him something that should arrive tomorrow. In the meantime......yes, I am literally wipting his butt. And nearly vomiting every single time I do it. Literally. It's a gag reflex I have had ever since my babies were born, no, if you have it, you just don't get over it. Sort of funny in so many ways, but horrible in so many other ways. Thank you occupational therapy for doing such a fabulous job of failing us in yet one more area. DUH!!!

Amazingly we got in to see his physician at 11 am yesterday. Used the walker to get down the front steps and he nearly fell into me once again. Got over to the clinic and realized that there was no way he was going to stay prone with that walker, so got him a wheelchair. You know...wait inline to check in, go to the 4th floor, wait in line to check in at the nurse's station, then the long (and I do mean long) walk to get to a room.....yep,we used a wheelchair. Neither one of us have ever used a wheelchair before so there were a few bangs getting in and out of the elevator....in and out of the room.....

yes, thank you once again to occupational therapy for not realizing that he could not walk the distance and would probably need a wheelchair!!!

His doc is an older gentleman who I like/hate. He is a generalist who doesn't belive in over-medicating....but he's just not so good at spotting what's going on. He thought hubby was anemic. Said to eat a steak tonight. I said....he's on a diabetic renal diet. Doc says, well, today we need to get him going, so feed him. OK....I will do that. I asked about a wheelchair rental and Doc said that this HMO does not cover that. He wants labs drawn which we do and then we go home.

Stopped and got him a double hamburger sandwich. Red meat! And realize that by now, he is literally so weak there is no way I am going to get him up the front steps. Called a friend who sent her hubby over to the house and we propped ourselves under each arm and got him into the front door.

I'm thinking to myself that there is no way I am going to survive this. My back is already killing me and I simply cannot support his 250 pounds!!!

Get him into bed and all settledand I called our HMO to verify the wheelchair policy. They said all I need is an order from a doc. So I called the doc back and left a message with this information and in about 30 minutes, the DME company called and said one was being delivered in 2 hours. But.....they do not provide wheelchair ramps. Called the company they recommended.....nope, this company does not rent wheelchair ramps.

Have another girlfriend who was in a car wreck and had rented ramps, so I called her to see where she got them from. She said she ended up buying them and is going to bring them down later today to let us use them!!!

During all this, hubby had taken a pain pill and gone into a deep sleep. He woke up at 5:30 and his glucose was down to 74, so he took glucose tabs and I fixed him dinner. I thought he ate quite a bit and complimented him. He asked for another pain pill and went back to sleep. At 9:00 I decided that I just couldn't stay awake any longer and crashed on the sofa.

9:30, my cell phone rings and I groggily answer it. It's the clinic - the labs just came in. He was down to 54 glucose on a blood draw at the clinic. Geez.....and the doc thought it was anemia??? You nearly have to laugh. And of course, because the doc said anemic....I didn't even think "glucose".

The nurse said the doc on call at the adjoining hospital wanted us to cut his insulin in half on the next dose. I'm thinking "NO WAY!!!" But I decided not to say a word. Then she said, "his creatinine is starting to go back up." From 2.4 to 2.6. I nearly laughed out lout. I said, "Well, just a few days ago it was 8.8, so 2.6 isn't all that bad." But she said, "no, but it is going in the wrong direction and we need to stop that."

I agree.

However.....

They had him off 4 of his meds for 3 weeks and we just started them back in. All 4 meds pull on the kidneys. Allopurinol, atenolol, terazosin, and fenofibrate.

He absolutely cannot do wthout those meds. Gout, Blood Pressure, Urin control, and cholesterol.

So what do you do? Suspend them again and risk yet another gout attack where he is in such pain that he is miserable....risk heart problem....have him peeing in his bed???

I really do not know the answer. If he has good kidney function, yet has a heart attack or stroke due to high blood pressure.....

If he is so miserably in pain that even the narcotics do not suppress the gout pain.....

If he, as an adult man, has no control over his bodily functions......

I really do not have the answer for this one.

He was so completely worn out after going to the clinic yesterday that I already know he cannot do this on a daily basis just to get labs done. Guess I will research and see if home health can come here and draw labs. He works for a major corporation which seems to have purchased some "add-on" benefits over the normal HMO packages since we did get the wheelchair covered yesterday. It sure makes it easier when I don't have to go research who provides what care.

But man! What a good lesson learning all of this now so that I know it all for my own aging process.

Of course, I emailed my sis and told her that I may well need her to come back in later this week.

I did wake him up after the call from the nurse. His glucose was 144. He still sat up and ate some pears. We both went right back to sleep.

It's now 4 am and I'm up writing my notes as the puppies woke me up. I am back to sleeping whenever I can. As long as I can. But when the thoughts keep me awake, then I have to write them down in order to let them go.

I pray that anyone who has diabetes will read this journal and keep up with what we are going through.....and realize on a daily basis that my husband is a guy who always, always said, "that will never happen to me."

everyone needs a bitch like me

at their bedside! LOL! My sister told her husband that if she was ever in the hospital, to make sure I was there all the time!

After another knock down drag out verbal brawl with yet another doctor today.....he is home! I promise you that I can give him better care than he was getting in that hospital. I walked in yet again this morning to find him in a soiled bed. I nearly lost it. He has been 5 days without dialysis. His creatinine is down to 2.4. His other labs are all borderline. They were obviously doing absolutely nothing for him whatsoever......and obviously not even "observing" him.

He fell coming up the front steps. Much weaker than he thought. So I called friends and they came and brought one of our adjustable twin beds down to the main floor. We set it up in the family room, which is open to the kitchen. I brought down the puppies crate and I will sleep on the sofa for now. He can practice steps as we have one step up to the main entrance landing. If he falls when we go to the doctors I will have to get help to come in.

I have to start calling at 7 am tomorrow to set up all the necessary appointments. He is talking that he will not do dialysis again, but I know that can change. We have to start all over with his insulin and get him in to see his endocrinologist, his nephrologist. He is back to wearing depends with a chuck across the bed at night.

But you know what.....he is home. No more charting the hospital's every move. No more sleepless nights worrying about what meds they might double dose him on. I left 6 pages of single spaced typed notes with the head nurse.....for just this past week. I told her I really hoped they would use them to make changes that might improve future patient's lives.

I don't think I mentioned the med problem. He and I figured out that they had stopped FOUR of his meds could turkey when his kidneys failed. One was the allopurinol 500 mg per day to control his gout. No wonder he had a gout attack. They stopped his terazosin (sp) which he needs due to prostrate problems....and that controls his urine. So they were charting him as incontinent.....when they stopped the med that he needs to keep him continent. Do you see the sheer stupidity of that? So we had a doc in and he agreed to restart 3 of the 4 meds. One was a beta blocker for his heart. But that doc failed to note that they had put him on a different beta blocker. I'm the only person who realized he was on TWO beta blockers. I asked the night nurse to hold it....and he said, "no, if a doctor wrote the order, we give it to him". I was wide awake all night long. When the morning nurse brought it in again, I asked her to hold it til I spoke to a doc. She went out, called the doc, who immediately discontinued it. So you know I was right once again....and they had made another mistake. I think it was huge. Double dosing a patient's beta blocker could have had is BP dropping so low he might not have revived.

needless to say, I am thrilled we are home, beyond happy that this part of our life is behind us, hoping that he will regain enough strength to do stairs...but realizng this may be our new interior decor plan! LOL!

I'm beyond exhausted and going to try to get him ready for bed next. I won't survive the night if he doesn't put that cpap machine on now!!!

dW