Well, time is here and we got to CCF today. Tomorrow, we are just going to relax after a long travel day. He has a full day of testing etc. (trying to find where all the fistulas inside are before they go in) and Thurs is pouch removal.

Dennis is in the best mental shape he's been in practically since this whole thing started. He's ready and is sure this is going to do it. I think he's just thrilled that his foot long prolapse will finally get fixed too.

Please keep us in your thoughts and prayers because he's still far from in great shape but I do think they'll do the surgery without TPN first. We'll know more by Wed night.

We know we can't be at a better place and have a great strong support system behind us. Hopefully this will be the answer have been searching for.

Thanks to all that have been such great support to us thru this. You're all wonderful.

Good, good, good luck Joan and Dennis. I'll be sending the heaviest of the heavy duty vibes that Dennis' ordeal will be over finally. [....sending mean glaring vibes to the original 'surgeon'....].

I don't have to ask you to keep us updated because I know you will.

kathy

Thanks for the update Joan. I was a bit worried about you since so much time had passed and I had not heard anything. I know, no news is good news, but I kept wondering if some calamity came up. But, you were just packing and getting on the road. How great that Dennis is mentally UP! That will go a long way in his recovery. I am sure you know that this will be very tough, but you guys live tough every day, so this should not be too much more than you are used to.

I have everything crossed for you, it is definitely your time for the luck wagon...

Jan

Hi Joan H,
Wishing you and Dennis good thoughts and prayers. I hope all goes well at ccf.
Take care

Hi Joan,
Just wanted to say will be praying for you both as you're back in Cleveland. Hope the surgery is as uneventful as possible and Dennis has a quick recovery. So glad to hear that he's got such a great attitude. Let me know if I can do anything for you!

--
katie

Hi Joan,

Just wanted to wish Dennis the best of luck with his surgery. I hope and pray that this is the end of Dennis's struggles. I have been reading your posts and know that Dennis and your family have had many setbacks.

Hope that your family has the best Christmas in that Dennis will be healthy again!

SURGERY DONE!!!! 4.5 hours. But looks to be very successful. I still haven't been able to see Dennis in the recovery area but that should be in the next 30 minutes or so.

Remzi found more rectal stump than he even expected to find (our attorney will like that fact.....), thinks the excision was a clean one and used a new recently used technique to clean up the prolapse and other small intestine issues without taking any more gut. Better than we'd hoped.

Yesterday Remzi wanted to make double sure now that Dennis is in a healthier frame of mind he was sure about what he was doing and didn't want to try for a re-do depending what was found when Remzi got in there. If Dennis still wasn't happy within 3 to 6 months, he could still get removal. Dennis said if it could be done by anyone, you are the guy but I just can't take any chances for more surgery as this is my last one. He'd been tempted after a bit of a terrific upswing since Thanksgiving er visit but just couldn't change is mind. Remzi said that given all that Dennis has been thru, in his shoes he's not sure he would decide to try again either. (Although he gave Dennis the k pouch lit in case he ever decides he doesn't want ileo anymore.)

Dennis and I both have felt the past few days that this was the way things were to go and we're in for a bit of good health. My stubborn husband has agreed not to give me grief, has excepted we won't be home for xmas and will stay in Cleveland until I decide he's OK to travel.

Thanks for everyone's well wishes and thoughts and prayers.

For anyone who is having problems past a normal adjustment period (and there IS an adjustment period), seriously consider getting to Cleveland Clinic. They work miracles.

I'm so relieved and excited right now, I could scream at the top of my lungs.......... Recovery is going to stink but I think this time, recovery is just that - recovery, not just getting healthy enough for another surgery.

(only bad thing is I lost a lucky amethyst amulet from my grandmother Dennis has been carrying, hooked it onto my tennis bracelet and it's fallen off. Hope it happened when I ran back to the guesthouse after talking to Dr. Remzi......... but I guess things have already gone well so the luck was used. Maybe it will give luck to whoever finds it!)

Joan, wonderful news, (even the part of finding more rectum than anticipated). You "sound" very elated with all of this and I hope it will help you and Dennis sail through the inevitable setbacks along the way. After what you guys have been through, they will just seem like a blip on the screen. Maybe you were meant to lose that amulet and it wasn't so lucky after all (look what happened while Dennis was in possession of it!!). And who knows, maybe Dennis will feel so good a year from now that he will want to entertain the notion of a Kock pouch and be rid of the bag.

I think it is going to be a very Merry Christmas, where ever you are!! Thank you so much for taking the time to keep us posted.

Jan

What a wonderful Christmas gift for all of you and for all of us too! Who'd a thunk we'd all be happy that MORE rectal stump was found??? I'm sitting here smirky smiling right now because of that. Who knows, maybe you'll be home for Christmas (heyyyyyy, that sounds like a great title for a song). Since he's getting it done right this time maybe he won't go through all the 'recovery' he went through before. And maybe the amethyst amulet DID bring luck and it's been 'passed on' to bring someone else luck. (This is only if you don't actually find it between here and there.)

Now we can ALL breathe again. Please give both Dennis and yourself a big, big hug for doing so well.

kathy

Well, I just gave him the amulet last week. It was my grandmother's. And I can't find it so someone else was meant to and have something good happen to them.

Right now I'm stuck in the guesthouse waiting for a call from the floor when he gets there..... was to be 2 hours ago but they can't get him peeing in recovery. He got stents put in his ureters (Jan?) and he's never had that before. When I saw him breifly in there, he was complaining to them of bad pain around his bladder and all that was coming out into the urine bag was blood. He's never had that before. Anyway, the nurse said all was good and he'd be leaving for the floor soon. Waited longer than needed, went to floor where he wasn't yet (and in same damn bed as last time, sure hope a private opens up this weekend because I really don't want to sleep with my head on that air vent again.....). Nurse called PACU and they were pumping more fluid in him and trying to get him peeing. He was so pumped full when I saw him the didn't have a wrinkle in his skin. Looked like a white ghost with a face lift! Anyway, waiting for a call from the nurse when he gets to the floor. She had PACU put a note on the chart in case he ended up somewhere else but I think she remembers him and told them to put on the chart he's a great patient if I'm there......

Oh well, what would recovery be without little bumps? Won't be home for xmas but got the boys a Wii to open on xmas and they'll be so thrilled that they won't even remember they are upset at our first xmas apart. Heck, they won't even want to bother to come to the phone.

Just talked to his PACU nurse and his stats aren't good so he has to have 2 units blood. They'll call me in a few hours. He said they've drugged him up pretty well for now since for whatever reason he can't remember he's got the button in his hand (he's used to 100% pain relief from fentynal patches) and have upped his ativan so he's not so upset that I'm not there.
I should go to sleep but I worry about him. I know there isn't a damn thing I can do that they aren't doing very well but I'm such a control freak I have a hard time letting go myself. As soon as I get to sleep, I'll get a call to come pull him off the ceiling or I'll sleep all night and see him in the am and he'll wonder where I was all night. Then I'll just have to tell the nurse to dope him up again or we'll have to change our......

Lost the damn thought- Remzi's resident just called to say that Dennis was refusing blood unless I was there. Of course, they don't have a phone to reach to him so off I went. Told him to quit being a major pain in the butt and TRUST. Nurse said Dennis was fine until resident showed up and then he freaked. Dennis hasn't had good luck with residents. Told Dennis these are NOT the same ones he's used to. If they are good enough for Remzi, they are good enought for HIM and me. Told him I already knew about the blood and it was OK. Reminded him he has me running around a neighborhood after dark he made me promise not to so he better cut it out. He then got very sorry. Told him that if his nurse of the resident tells him anything, I ALREADY KNOW. If I have issues, I'll already be there. I know where he is and why, have already talked to the nurse on his floor and he needs to start trusting someone besides me because I can't be everywhere and they won't let me stay in the PACU. Come to find out, his hemoglobin is at 4 nand hematocrit at 15 so they are running in 2 units, checking, running in 2 more and then will decide. Dennis was a paramedic so he KNOWS the numbers. He says he gets confused when I'm not there. Now why he wants me there when I enter the room with "It's now time for you to quit being a pain in the a$$." is beyond me. He says he doesn't understand why. I asked the nurse the numbers, the nurse tells me and I say 4 and 15 Dennis? Come on, you know this........ And then he says, I know, I just got confused! He apologized to the nurse. Nurse said he was FINE until resident showed up then he freaked. Said we've not had good results with residents. Hopefully the reminder of where he is and the quality of residents under remzi will help sink in. I told Dennis I want NO MORE calls until he gets to the floor. I will know what they are doing and he needs to trust they know their job and that's why we drove 600 miles to get here.
Nurse said he only lost 300CCs of blood during surgery but they pumped him so full of fluid they just diluted him and he doesn't have a bleed anywhere. Better try and rest because they hope to have him floor ready in about 2 hours. Lucky nurses. See why they put "Pt is good if wife is around....." And it's not like I'm even nice or baby him. I left him with an I love you very much but if you do this again tonight, you may have to change your answer to are you afraid of abuse because I'm going to whack you over the head. And how goofy am I because I love him more than anything!!!!!! He just smiled. He's used to his pain in the rear smart butt wife and he wouldn't have it any other way either. I think if I babied him he'd be afraid he was dying!

Ahhhhh - he's complaining! That's a very good thing! I'D be thinking there was something wrong if he was just lying around not complaining! At least he remembers that he has a wife and he knows who's queen in the family. Good for him. I know this can't be easy for you, but he definitely is in the very best place he can be in. Thanks for the updates.

kathy

Well, after last post I fell asleep waiting for the call that he got to the floor. Got a call from him at 4am saying PLEASE get over here. So off I go (damn I'm looking good about now) to find they ran 2 more units of blood in PACU (4 total) thought that he was stable, got him to the floor and his blood pressure went to 60 over 30 some and his pulse was at 120. They thought they had him stablized but now are running in his second unit of plasma because his hemoglobin is up to 11 now but his protime I think is way off.

THink all the comotion scared the people in the next bed. When I walked out of the room to get him something she told me they'd been praying like crazy. I thanked her (and meant it) but almost laughed. People really don't understand what these surgeries involve.

Have him on the list to get into private and the night nursing care manager over this floor and the area with the privates came and told me she knows she has a discharge today so she is letting the day NCM know that Dennis needs moved over. She said unless admitting screws something up, he should get moved today. Keeping my fingers crossed. At the very least, the guy in the next bed gets to go home today it sounds and his wife has a recliner chair. I'm snagging that sucker the minute they are out the door because we're in the same damn room as last time, it's freezing cold and I'm not going home with bronchitis because I have to sleep with my head on the freezing air vent.

Hopefully today will be slow and uneventful and at some point, I can run back to the hotel and change out of yesterday's clothes........

And scary part is, he's not complaining as much as I expected. I'm used to him giving greif to us all and he's not. He was mad because in all the confusion he couldn't make them call me. When they finally left him alone for a minute, somehow he figured out how to use the phone to get the hotel. That's funny because he's pretty out of it to get that accomplished.

Who asks for an NG tube? Dennis. He was so bloated and had so much pressure so they gave him one and immediately, 400ml (with blood) came pouring out. Helped some. His bleeding won't seem to stop so they've put pressure bandages on. Dr. Remzi thinks it's going to stop bleeding so he's waiting until tomorrow am to see if he thinks he needs to go back in.

And he's still not complaining- poor guy is too wiped. Step one was NOTHING compared to this one. Now I know why they made him wait.

You can get bleeding in the stomach either from a stress ucler (usually associated with steroid use) or from over distension (called gastric dilitation). I had a patient once following a gallbladder removal and they did not insert an NG tube in the OR. 12 hours later he was vomiting old blood. I put in an NG tube and 1000cc returned!

I sort of wish that they kept the old standard of every abdominal surgery involving the organs having an NG tube for at least a day or two, but times change.

Jan