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.



Lilly said...

It's good that you are educating yourself as much as you can. Unfortunately, you're probably learning more than you ever wanted to know, but it is also empowering to know where things stand, and what the choices are. It also can be terribly overwhelming. As you probably already know, dialysis is hard on the body, and fentanyl can cause a whole host of side effects. My husband has done both, and it was not at all easy. Also good that you have gone to just e-mail with your phone tree. I'm thinking that in your shoes, I would find that easier than all the phone calls. My prayers and best wishes continue to go out to you both! Wish I could do more . . . take care.

Lynn Barry said...

I don't know how I missed this one. I thought I checked yesterday...but any way. I see a development...a quietness and a resolve in your blogging this time...a this too shall pass kind of hopefulness, grounded in your reality but at least there seems to be a light not a flicker...good job, dear wife of a diabetic. You are amazing...thanks for inspiring me...on a personal note my hubby was just upped to 100% disabled at the VA and he said, "I guess I am worse off than i thought."
hugs and love...and again thanks...continued prayers and gratitude for sharing your story and your heart.