Saturday, February 05, 2011

12 hours of sleep

You would think t would help. But I have cried so much today. I came in and he is now on infectious care. I have to gown up to see him.
2nd dialysis today
Vomiting in bed all over himself
NG tube back in and they have pumped out 2800cc - yes, you read that right- in the last 4 hours.
Internal bleeding
Oxygen back up to 6 ltr
Colostomy and catheter
I have had to leave a few times just to compose myself. Know that I need to walk away and go home, but that scares me.

I love him so much

I walked in and he put his arm up and I said, what do you need? He whispered, hold me. I wrapped both arms around his arm and said again, what do you need? He whispered, I just want you to hold me. So I sat for 1 1/2 hours just holding his hand.

My heart is breaking.

I'm going home to watch the hallmark channel and sob my heart out. My girlfriends are bringing comfort food. I pray tomorrow is better. I know this guy and have seen him turn things around before so I haven't given up hope yet


Friday, February 04, 2011

Complete shut down

His kidneys have stopped. He is back in "mini" surgery having a port put in for dialysis. He has always said that he would never agree to dialysis, but I talked to him yesterday and got him to agree. I told him that if he refuses it in the hospital, he will never walk out alive. I got the nephrologist to agree to only put in a temporary port - good for one week at most.

I had to sign the consent form. That's how out of it he is. Me. I had to sign consent for my husband to go on dialysis - which we both consider to be life support - and we both have DNRs.

But I also know that if he refused, he will go from here to a nursing home and never get out. I want him home so he can make all the decisions.

And I have completely shut down. Nothing matters. Tomorrow doesn't count. Hope doesn't count. Thinking about yesterday isn't possible. I feel like I am in a shell and the shell only exists for this moment only. So I know it's a form of shock and I'm very aware of what I'm going through and I'm simply allowing myself to take the steps I need to get from this one minute to this one minute.

He has a wonderful team of nurses today. I love the endocrinologist here and am so pleased with the nephrologist. The critical care doctor is avoiding me like the plague, and I'm certainly ok with that! My sis is here by my side making sure that I eat, take my pills, walk. I think she wants me to nominate her for saint-hood! She is taking care of everything at the house.

I don't know when they will do the dialysis, I'm hoping farily soon after they get the port in. OK, so I was explaining to someone else, he has had a port in his upper right chest since Monday. He has 3 IV ports in his right arm and 1 in his left arm. They still draw blood directly from his left arm for labs and still inject his insulin directly into his stomach with needles. I just don't know how much more one human body can take.....and now dialysis.

If it goes well and he has no adverse reactions, I will go home and sleep in as long as I want tomorrow before coming back in here.

I have been sitting here just wondering what diabetics think. I have heard so many say, "I take good care of myself. Nothing will happen to me. I'm compliant. I'll never let it get that bad." And I know my husband said that all through his 20s and 30s. But as a person ages and other parts of the body start to years and years of having this disease start to take their toll on the can anyone say "it won't happen to me."? My heart aches for all the diabetics who are going to be in my husband's spot and have no clue what is coming at them or how hard it will hit them. But my heart weeps for all the spouses that will go through this.

My brother-in-law was healthy as could be and died in his sleep of a heart attack at the age of 55. We should all be that lucky.

No one should suffer like my husband is suffering this week.


Thursday, February 03, 2011

Beyond awful

One of these days I will assemble all my notes. Right now they are on my laptop, ipad, iphone and in emails. I'll put together a timeline. But just know this has been my absolute worst nightmare.

Example of just one conversation this afternoon. Hubby is in ICU. He cannot see. His kidneys are functiong at 13%. And the critical care MD is arguing with me about his insulin. I swear! I did not back down. I finally said, "you sound like you are upset with me." he said, "I feel like I am being attacked" I said, "I'm no where near attacking you - I'm trying to get you to understand why you should not switch him from Humulin R U500 to novolog. But you do what you have to do. His endocrinologist said that if anyone wanted to switch him off Humulin, they were to call her." and I gave him her number.

Then I pulled out my gigantic spread sheet and showed him hubby's past tracking of labs. You cannot fathom the change in this doctor. I think he realized that I know what I'm talking about. He called this hospitals endocrinologist who just now left the room telling me they were NOT going to take him off his Humulin!!!

So why did the critical care MD ever even have the argument with me? Why didn't he simply listen to my concerns, then call the endo?

And that is what my entire week has been like.

To top it all off, I woke up to blood in my urine this morning! Can you even believe that? I'm sure I have a kidney infection from sitting in surgery waiting all week long. Fortunately, my HMO has a clinic about 5 blocks from here and while it's not where I go, my doctor is amazing and she called an RX there and didn't make me go see her (an hour from here). I'm flushing my system with diet 7 up and cranberry juice and am already doing so much better. But did I need this? NO!!!

As you can see, I am stressed out and my body is starting to show it. When I told my doctor everything that was going on, she said, "and all you have is blood in your urine???" That made me laugh!

Hubby is running a temp of 103.3 now. So I will stay with him awhile longer. Been an awfully long day and I know I need to get some rest, but I'm hoping to meet with the hospital nephrologist because his kidney functions are so low.

I keep telling myself it can't get any worse.....yet it does.


Tuesday, February 01, 2011

And the nightmare begins.....

Those who read me, know this is my place to vent. So that when I'm with hubby, I can be supportive and encouraging. So I have to vent about this hospital and staff, because in a couple hours, I will be there, and then I have to be a cheerleader!

My sister is with me. Thank God! But on the drive home last night she said, "I could never be like you." I said, what do you mean? She said, "you just coo and coddle him, you say all these really sweet things to him to make him feel better. I'd be like 'get over it' if that was my husband laying in bed!"

Just had to laugh at her! But it might let you know that when I'm in front of others, I'm really a good wife. This is my place to vent and get it out of my system so no one else hears it.

But that hospital might just hear it today!

He was in recovery for 3 hours. I knew that wasn't good. He finally got to his room and when they let me in to see him - he couldn't stand. He has no feeling in his left leg from the knee down. He can move his foot. However, he says he's not moving it that it's involuntary movements. The nurse said it is swelling from the surgery and just temporary. But let me tell you, that man was scared to death.

I actually had to excuse myself for a moment and go out into the hall and take several deep breaths. What do you do when your husband is so scared, and you are, too, but you have to be brave in front of him?

I went back in and immediately just started repeating to him over and over that it was just swelling and that it would go away, but that it might take a week or two. I rubbed his hands and his arm, rubbed his forehead, cooed sweet nothings to him until he finally started to settle down about an hour later.

He was having trouble breathing. He would doze off and simply not breathe. I don't know why they did not put him in ICU for the night, but they didn't. The floor nurse was just horrible. I mean truly. No eye contact. No personality at all. I handed her his bottle of humulin R-U500 and she said, yes, we are handling this. I said, what is his glucose? She didn't know! So she got a meter and took it. It was 320. Now, mind you, he had not had anything to eat in the past 24 hours. So I asked what insulin they had given him and she said 5 cc Novulin at 5 pm. I'm sure the look I gave her was horrified....but then, remember, she made no eye contact with me - so she didn't see it. Even hubby told her that was way too low. She kept saying it was the same as Humulin R.

I got home around midnight and crashed. Then woke straight up in bed at 3:30 am realizing that the hospital staff was reading it just as humulin r, not adding the U500 to the end of it. So I printed out his RX, printed out the description of the drug, made up a huge print sign with all his RXs to take and tape to his wall, then called to check in on him at 5:30 am. A different nurse answered (thank goodness!) and said that his heart rate has been elevetated - around 125 to 150 all night long. So he is struggling. I asked what his glucose was and she said she took it at 2 am and it was 320 again. So I took the time to explain to her that I thought there had been a mistake in his meds. I explained the difference between regular and U500. She looked in his chart and said that the doctor had reduced his dose from 32 to 16 units in the morning and from 20 to 10 units at night. I said, "why would you reduce it if his glucose is 320?" She said she did not know.

I asked when the doctors would make their rounds - she did not know that. So I asked if when I come in today, could I speak with the doctor on call? Of course, she said that I can. So I will.

I looked up the patient advocacy number for this hospital and will call it if I don't get positive results with the doctor. Hubby cannot stay at 320. He just can't! And I'm certain no one at this hospital understands humulin R-U500. On my list of meds, I've printed his endo's name and phone number along with his PCPs contact information. I'm taking my own scotch tape! LOL!!!

Since I sort of want him alive and in working order, I will take on the role of advocate once again. Much as I do not want to, I will do it. I absolutely hate that this burden has been put on me. Doesn't have a thing to do with how much I truly love and adore this man. This is NOT something that I signed up for. But will willingly take on the role in order to help him through this.

Honesly, I do not know how he will survive tomorrows operation. It absolutely killed me to watch him last night. He was in so much pain, so scared about not feeling his left leg, and a bit in a delima due to his high glucose - which they obviously allowed to remain high all night long.

At midnight, I had to leave. I was on the verge of collapse and to make matters worse - our weather is not cooperating whatsoever. I have never divulged where we live, but needless to say, most of the US is being consumed by a winter blizzard of which we are not exempt. Driving in such inclimate weather added an unneeded stress factor and we are facing it again this morning. It's only an hour to the hospital on a good day. Go figure that the worst of it hits when he has surgery scheduled! Well, OK, I'm hoping the worst is over!

I am keeping notes, but just realized that I need to start keeping even better notes as he may well not survive tomorrow's surgery, based on how they are handling his insulin. How truly, utterly, completely sad is it that a family member knows more about his insulin than anyone on the hospital staff can figure out?

I am so not prepared for today, but I will manage no matter what. I'm going in on 3 1/2 hours of sleep - knowing that will have me on edge. But I cannot sleep at this point and who know what time I will need to be there in the morning because surgery starts at 8:30 am.

May you never ever have to go through this with your loved ones - diabetic or not.


Monday, January 31, 2011

I'm pissed!

He's not out of surgery yet, but I am pissed, so going to write about it and see if I can't get over it!

His surgeon came out about an hour ago. Said this was the hardest case he had ever done. Hubby is morbidly obese (259 lbs). Has put on 40 pounds since bypass surgery a year ago. I think the surgeon was blaming me. I wish I could re-do that conversation. I'd make it clear that it's not MY fault! Hubby fixes most of his own meals as he never likes whatever it is that I cook. He will go to Burger King whenever he wants. He sneaks candy in his truck all the time. I'm NOT his mother - I can't force him to diet or alter what he eats. So I'm mad at the surgeon for even suggesting that "I" have to get him to lose weight!

He wants to put him on a protien, no carb diet when he leaves here. I told him that the endo says hubby has to have 45 carbs per meal. Can't do that on a no carb diet.

So surgeon said what about gastric bypass surgery?

Now, how can you eat 45 carbs per meal when you can only have an ounce or 2 of food at a meal after that surgery?

Sometimes I just wonder about the medical world? I understand that they are all so specialized that they don't know what one specialty needs from aonther.

But don't put that burden on me!


They couldn't get to the L3 - he is too fat. Said his veins would not move. I'm thinking it's atrphy from diabetes. NOT fat. But you know, I'm not a doctor, so what do I know? I mean, they guy has had diabetes for 30 years and here's what we've been told:

His heart problems are all due to poor genetics
His back problems are all due to poor genetics
His gout is due to his Scottish ancestry

Do you understand why I'm about ready to scream my head off? No one, and I mean NO ONE is even considering that ALL of this just might be a result of 30 years of poor management of diabetes!!!


OK, I will quit my ranting. The neurosurgeon is done, but they now have to put him back together again.

Oh, they nicked his femor vein in his left leg going in, stitched it up, but have to be aware of possible blood clots and he has to constantly exercise/move his feet. Ya think he's going to do that???

One can only wonder what's going to happen on Wednesday when they do the second part of this.

So they only fused L4-L5. I wonder if that's enough to relieve any of his pain.

The neurosurgeon said that he didn't gain 40 pounds this past year by not exercising. I'm thinking, yes, you don't move at all, you simply sit in a chair or lay in bed, you can easily gain 40 pounds in a year by simply eating the same way you ate the past year.

Will there ever be a physician who looks at the whole person?

I sort of doubt it!


Sunday, January 30, 2011

The night before surgery...

And all thru the house, not a creature is stirring...

Because I think we are all worried and apprehensive. Still doing pretty good not allowing myself to worry and fret. But wondering if it's possible.

Lilly, your comment was right on. Do we take a proactive role - do I check the quantity of humulin he gets and the time... Or do I let the hospital staff make their mistakes and do whatever they need to correct it. I was proactive with his heart surgery. I think I might not be with this one...but I won't know until it happens and I know that.

Keeping myself busy so I am worn out - which means I am sleeping great. He is not sleeping at all, so I know he's worrying about surgery.

24 hours and we will know how the first one went.