Saturday, February 12, 2011


I went back to the hospital at 12:30 am after 2 hours of sleep.

I sat by his bed and held his hand while the suppositories kicked in.

I sat by his bed during 4 1/2 hours of dialysis so that when he looked up, he saw my smile, and he wasn't disoriented.

I laid my head on the bedrail and held his hand while he dozed, back in his room.

I got into the shower with him and bathed him while he sat on a chair tethered to his iv pole.

I kissed his forehead and came home at 5 pm after holding his hand for more than 16 hours.

That, is love.


Friday, February 11, 2011

in the pits of dispair.....

I got in there at 6:30 am. And found him in a saturated bed. I do not know if it was a burst ice bag.....or urine. I don't know how long he had been there. He was upset. He had pressed the call button and they said they would come in. He didn't know how long that had been. My sister went out to the desk and 3 nurses were in there immediatly. God only knows what she said to them. I was mad. I yelled. Then I said nothing.

When the surgeon came in, I took him quietly aside and told him exactly how I had found my husband. He looked right into my eyes and said, "what did you say?" and I repeated myself in a very quiet, calm voice and added....I'm quite concerned about the safety of his incisions.

If I could draw a cartoon of heads rolling - I have a whole new vision. That surgeon started shouting orders faster than I could think! It was just unreal. I have never seen so many people in one hospital room ever. They pur waterproof dressings and sealed every single incision on hubby. The brought in a special air bed for better comfort. The brought in 2 urinals, new ice bags, special hand cleaner and gloves for me as I'm allergic to the standard ones. I mean in 20 minutes everything I have requested this past week was in place plus more!

After they all left, I sat there in the chair next to him, holding his hand, my head resting on the bedrail, and cried my heart out. I simply do not understand how any hostpital today can leave a grown man in that condition. Complete, utter, sorrow and prayer that he will not remember that.

When they did the nurses report, the night nurse said he had been incontinent. I looked at her and I said where is his urinal? She looked around and saw that it was out of his reach. I said, "you chart that as well. He is NOT incontinent, he was incapable of reaching his urinal and that is YOUR fault."

By 11 am, he was more than exhausted and I was beyond drained. I remember praying to God to give me the strength to make it through one more moment, to dry my eyes, and to turn me back into his great cheerleader. Somehow, I managed to live through this day.

He was still pumping too much gunk out of his stomach this morning. The surgeon actually yelled that there was not going to be any discharge until his ileus was completely healed. I know hospitals are gung ho on counting days and yesterday, they were saying that he would be transfered to a Long Term Acute Care Hospital. But that didn't happen. I think the LACH is where they tell you dialysis is permanent.

Bless the surgeon's heart I know how medical staff are required to be positive and hopeful, and can't tell you the truth. The surgeon looked right at him and said, "You have the look of someone who's kidneys have died. You have that ashen look."

Finality. Past tense. Kidneys are dead. Dialysis is permanent. I can start to wrap my head around this. While the nephrologist comes in and still says, "well, we'll see what the creatinine levels are tomorrow, but it will probably be a dialysis day". I can start to know that it will now be every other day. I think the LACH is where they tell you that it's permanent. Where they say the words "End Stage Renal Disease", Where you get counseling. Where you make life altering decisions.

But he just has to get well before he goes there.

They clamped off the NG tube about 11 am and started with apple juice. Then beef broth. He has managed to keep them down all day long....but still absolutely no output. I will see how distended his stomach is in the morning. It's possible that after 12 days NPO that his body will simply absorb the first few sips. Only time will tell. He savored every sip. He was beyond adorable. I cannot wrap my head around the concept of not eating for 12 days. Can you? He is probably down about 30 pounds. If he can sit in the shower tomorrow, I will be thrilled. OK, I can't wrap my head around no shower in 12 days either!

My sis thought he was doing much better today. I am doing much worse tonight. I think "dispair" is the word that comes to mind. His speech is so slurred. He is definitely having problems with memory, time, events. And I know I am exhausted, running on fumes tonight.

On the bright side, my art pals filled my refrigerator today with quick easy grab-n-go type food. We are set for the next few days and can skip the grocery store. I love my friends - so amazing!


Thursday, February 10, 2011

That dang roller coaster...

And it's not even the sugar one!! But related. Yesterday, they tried dialysis, nd he clotted. Wanted to send him to get a tunneled port, but he had been on blood thinners. So they did the port this morning, and he's in dialysis now.

How do you stand it? How do you sit and watch blood coming out and going back in? Can he do this? I know he's going to be mad at me when we get home. I know he has always said he would never do dialysis. I know, I know, I know. But today, that all goes on the backl burner as I play cheerleader once again to get him motivated to get up and walk so he can come home.

I got 12 1/2 hours ofnsleep last night. He called and woke me up. The night nurse took him off ice chips and he was miserable. By the time I got here, he was off getting the new port in. I met up with him in dialysis. After I had a conversation with the floor nurse. Explained to her that they can do anythingnthey want, but when he is this miserable, they HAVE to do something. She got him ice chips stat!!!

Why do I have to do these battles??? Why can't they use an ounce of common sense?

He has c.diff. And I have to wash my hands all the time, put on gown and gloves and do it over if I move. My hands have had a reaction to the soap and my arms are literally burning from the tips of my fingers up to my elbows. They are trying to find me different soap and gloves today. At least they are trying.

Today is another day of tears. He is improving. Truly. But I just hurt so bad for the pain he is in. I ache for the choices we have to make in the days to come. He is begging for food and he is still npo on a stomach pump, still has an ileum, stomach is distending again. And Theresa always the threat of uremia. His WBC continutemto climb. No bowel movement in about 36 hours. It simpl wears on the soul. Probably hardest is the fact that I have to stay chin up around him. So I continue to function 1 step at a time.


Tuesday, February 08, 2011

my therapy

Coming home and writing all my thoughts and fears here. So that he will never know. My personal, heartfelt journal of the process of grief, hope, loss, faith and so much more.

Thank you for your comments. It's ineresting to me how God is guiding me through this process, one step at a time. I could not make it without my faith. I would be lost without my trust in Him. I ask Him daily to grab my hand and keep me afloat and somehow, at the end of the day, here I am!

The gave him a respite today - no dialysis. We spoke to the nephrologist quite a long time. We agreed to just take this day by day. So it breaks my heart that originally, he was supposed to be discharged tomorrow. I don't think we are close to that just yet. I will be in at 7 am to see what his creatinine is and I will know from the numbers. If it is above 6.8, then he will have dialysis. If it's at 6.7, then they will look at other labs and make the call.

The doc promised to talk to both of us before they put in a different port.

Hubby is still hallucinating and we've decided that's from the fentanyl. Pretty strong stuff. He agreed it's better to stay on it and hallucinate, than to deal with the pain.

NG tube/pump is a huge problem. 7 days with no nutrition. 2 days on iv nutrition. Starting to concern me. They did an xray tonight and I left before the results came in. When he went to xray, he passed out. The hospital has a "rapid response" and no one called for that, so heads were rolling. If they have to do surgery on his stomach - I doubt he would survive. I'll leave that problem for tomorrow. But he is pumping out way too much stuff from his stomach - horrible green bile. Again, I want to get in there early to meet with the doctors once again.

He hasn't even had his back brace on yet because his stomach is so distended. Something simply isn't working inside. And he knows it. The more he wakes up, the more he realizes whats going on, the more pain he feels, the more he hits the pain pump which increases the hallucinations.

With the cdiff bacteria going on, they now think he may have a yeast infection in his mouth. I tell you, I just don't know what else can go on with the poor guy.

I am shutting down and I know enough to tell my sister. I'm closing off to the rest of the world. And I think this is completely natural I have to insulate myself to protect my heart so that I can be strong for him. Sad, I'm the kind of person that if you are sympathetic around me, then I will break down and cry. And that has to wait until later. I have to go in there and be strong for him. I have to do battle, because he can't. I have to research and study so I know what questions to ask.....and today I asked away!

I don't think he will ever agree to a dialysis diet. I just don't see him restricting his intake that much. I honestly don't see him going to sit 3 days a week for 5 days. I had always assumed we would do home dialysis.....but now that I've truly had it all explained to me....I don't think he would want to do that either. I'm sure we will figure it out when we have too.

My phone call tree has turned into an email tree, so today, I just sat and held his hand. He said it made him feel better. Every time he opened his eyes, I was right there. He is just so worn out. So completely exhausted. So I fear what tomorrow might bring if they have him do another dialysis treatment.

I'm too tired to think about what else went on today. Going to try and get some sleep. Here's the problem with that. I wish I could take a pill and get a good nights sleep. But I can't in the event the hospital calls and I have to get back down there.


Day 4 dialysis

Whew. I truly wonder if I will suvive this. I'm researching like crazy, trying to absorb as much as I can. Planning to see if the hospital has any education on dialysis they can offer me. I need help!

Yesterday, after his 4th dialysis in 4 days, I realized that all of his hallucinations are most likely from the toxins being replaced in his brain's blood supply. He said I was wearing a plastic bag over my head and that there were plastic bags floating in the sky. Then he said there was glitter on the ceiling and that it was blue (not white accousitcal tiles!)

Just before that, he was completely beside himself saying that he just wanted to die. He didn't want to continue dialysis. He just wanted to die. He wanted to pull everything out of him. He was crying. I tried my best to be his cheerleader. Telling him that he had 3 little grandchildren that needed their grandpa. Telling him that if he died, it would surely kill his mother, so he had to stay alive so I didn't have to tell her anything. I pulled out all the stops and he finally settled down. But I was so drained, I just thought I might die myself.

I know that I also have to ask for therapy to come in today for him. Not sure he will understand or comprehend anything, but I have to ask.

On the upside, he is out of ICU and into a private room. Still under infectious control. No status on the c.diff yet. I think he has to be on iv flagyl for 4 days...but need to ask that question again today. Just way too much going on for me to remember all of it.

They were talking yesterday about putting a permanent port in for dialysis. I need to have it written in his orders that we need to discuss this first, since he has always said that he would not do dialysis.....and since he wants to stop and die after each treatment.

I have to tell you that it simply breaks my heart. The most devasting thing on earth is to have the person you love, holding your hand, saying that he wants to die. And saying it over and over in such a terrible terrific moaning voice. He truly just wanted to die.

Once we got him into his room last night, he started telling me to leave. He wanted me to take everything and move out of the house and leave while I could. Of course, I made "light" of it and told him that I hadn't found the right "box under a bridge" so I had to stay put. :o)

He has absolutely no idea what I have been through the last 8 days. I know my readers know. But he doesn't. The utter heartbreak. Crying streaming tears in sheer agony to God to give me strength to make it through just one more hour of the literal smell of death coming up through his body. Knowing that having worked in the medical field in the past, I am fully aware of what that smell is.

I thought I knew what the roller coaster ride was. But this is so much more than I have ever experienced with him. One moment, bracing for death, the next, celebrating such a tiny victory as him squeezing my fingers. Going from him being blind to having his vision back. Listening to him moaning that he just wants to die - to talking about where we are going on our next vacation. It seems to go from the lowest low to a rather positive high, just to sink so eternally low once again. It is aging me. Being a constant cheerleader is aging me. I have had my moments when I had to flee his room and find a quiet place to cry my tears of heartache and dispair.....wipe my eyes and go back in with my "happy face" shining bright. I just have to be a rock in front of him. But this rock has it's moments when it shatters to nothing but grains of sand and then has to rebuild into another rock. It's so hard.

I'm making adjustments. I'm crying at night when I'm home alone in our bedroom. The process of crying seems to wear me out and allow me to sleep so soundly. So that's good. Today, I need to get all my notes into one place, get them in order, edit them, review them. I've asked my sister (bless her soul, she has been with me 24/7 since this started) to start taking notes as well. Just because I find I'm getting confused as to what day he did/said what.

Yesterday he walked 8 steps and then started to lose his vision. No one knows why. Before that, when he sat up in a chair, he started to go blind again. Of course, he panics. I would, too! But when he panics, his heart rate shoots up and everything just goes out of kelter. His BP is not dropping, so no one know what's going on with his vision.

Thank you for all of your comments. While I'm not reposting them and making my comments back, just know that your support means the world to me. I know that each of my readers either has experienced what we are going through, or knows that they may one day soon go through this journey. There is absolutely no way to prepare for this. If you know the steps in the grief process, I do think that eliminates fome of the surprise of feelings that happen. When I get mad at a nurse....I can stop and ask myself if it's just the "anger" phase, or did the nurse really do something that justified my anger. Things like that help. I've been able to understand shock so much better - I just want to walk away from everything. And it seems that every single day, I am at different levels of the grief process on different issues. And just being able to pinpoint where I am truly helps. So if you haven't been to a grief training class - find one.

The other thing I have realized this week is that you cannot counsel others when you give them bad news. When I'm in the "anger" phase....that's just not a good time for me to inform anyone else that he's on dialysis. Because they are going to be in denial. And if they deny his condition when I'm angry about it.....well you can just imagine!

So I have picked one person from each "group" as my contact. My sister for my family. His brother for his family. One guy from his office. One artist from my pals. Those 4 people get a phone call or an email (usually email) from me each day. I have asked everyone else in each group to contact that person for updates. I had taken over 100 phone calls from friends and family wanting updates on him. This system has truly helped. And while his parents are livid that they have to go to his brother for updates, it has eliminated me having to listen to them cry and carry on - something I just could not do right now. My husband will have to come to understand that later on. I also realize that this "system" is going to need to be solidified in the near future as even talking to 4 people on a daily basis can be quite draining. And my sister can't stay with me forever. She needs to go home and take care of her husband. But for the moment, this has helped me immensely.

Time to get up and get dressed and get to the hospital. Posting my thoughts here truly helps!


Sunday, February 06, 2011


It's amazing how calm I am when I KNOW what it is! No, the idiot doctors did not tell me, but I simply entered all the things that are going on and it's uremia. And he's probably had it since Tuesday. Drowsy, sleepy, difficult to arouse them from sleep, inability to think clearly, memary impaired, disoriented, confused, slurred speech, no speach, twitches, shaking.

That or dialysis disequillibrium: nausea, emesis, blurred vision, muscular twitching, disorientation, tremors......

Either way, I will ask the doctors today because I just do so much better having an answer. And I understand their unwillingness to make a diagnosis of either of these in ICU. They did back-to-back dialysis, less than 12 hours apart. Pulled off 6 liters of fluid, in addition to the 2800cc that was pumped from his stomach yesterday.

I have absolutely no idea what today will bring. I could not sleep last night so I was up researching all night long. My adrenaline has kicked in again. I'll be fine! Gotta love those adrenaline rushes!

My girlfriends came over and brought comfort food. They actually googled it. Mac & Cheese and mashed potatoes. Is that a hoot? Choc chip cookies, chicken, corn....they did me good, with enough to keep in comfort for several days.

I finally realized yesterday....or finally "got it" that my friends NEED to help. They so desparately want to do something, so starting today, I will ask. I have someone bringing their puppy over for playtime with our puppies this week. Someone taking care of getting rid of the snow. Planning a craft evening with art pals.

So uremia. Pretty serious, huh? I know. I know he can bound back from it. I know he can die from it. I know he may be on permanent dialysis - which he has said repeatedly that he will not do. I know that if he doesn't, he can come home and be dead in a few days, weeks or months. I did more research last night than I've done in ages, but I am so much better prepared. Knowing the process of ESRD....that they go into a coma, not quite so bad as anything he's been through this week.

Today, my goal is to just get through today. Pretty simple. Keeps me from thinking about the future. Keeps me from thinking about the past. So many people all around the world are praying for him. I've made his brother the contact for his parents so I don't have to talk to them - huge relief! I have picked one of his employees for that group, and my sister that is here with me is taking care of the rest of the family updates

I have an aunt who is a critical care surgery RN and she called me last night and went over everything. Said that they might put him on a Bipap machine to force oxygen into him. I so appreciate her letting me know. Again, education is so much better than surprises!

I still believe he can turn it all around. He could get out of ICU even today! As impossible as that sounds, he's done it in the past. When I had the least hope....he turned things completely around.

Finally, I know how difficult this is for those who fear they will be going through it in the near/distant future. But on the other hand, I hope there are those reading my journal that think this will never happen to them. You are the person my husband was up until about 5 years ago He was in denial the first 25 years of his disease. This would NEVER happen to HIM.

But it did. And it is. Again, I don't think it has anything to do with how well you take care of yourself. It has more to do with how old you are, the natural aging process of the body, how long the disease has been in your system, what additional issues you just all adds up. And while nutrition, exercise and good glucose control may prolong it.....chances are it will still happen.

Today's battle will be this. The neurosurgeon claims he needs high levels of protien and no carbs in order to get his incisions to heal.
Endocrinology says he needs 45 carbs per meal for his diabetes.
Dialysis says he needs no protien.

I think I need to schedule a joint meeting with all 3 entities this week. That should be a fun one! :o)