Lealonnie and Hubby: Liver Transplant Journey

Added onto the Caring Bridge post of 5/8/22:

When I got back to the hotel earlier, I was shocked to see that my 2 daughters and my wonderful daughter in law schemed behind my back to decorate our little studio apartment here at the Marriott!!! DD told me she was taking a 'nap' for a few hours while I was visiting Chuck, but she was really buying things and decorating the place for a Mother's Day surprise. A weighted fur blanket, faux plants/flowers, a throw rug, 3 throw pillows, 2 GNOMES (My favorite things ever) and a dry erase board among other things (like a small cannister set to house the dog food/treats) adorn the place and now it looks SO much homier!!! Also a photo of Chuck & I when we arrived here in AZ. I was in tears (which happens quite often lately) when I saw what these girls cooked up for me today. 
 
Happy Mother's Day to everyone, and thanks for your continued support. It is very much appreciated.

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My step daughter is throwing a huge temper tantrum about my DD the RN being here and was sending me snarky texts all morning! She was livid that my DD was exposed to Covid which WAS unfortunate, admittedly, and insisting that I 'prevented' Chuck's children from seeing him before the transplant so I had no right to allow DD to come here. In truth, we saw her 2x right before we left for AZ, and her argument is nonsensical. Anyone who knows DH knows he is not a henpecked man or anyone that would allow his wife to make the 'rules' which is what she's accusing me of doing. Anyway, I told her she doesn't understand the magnitude of stress I'm under here, & to pls keep that in mind when messaging me, which she ignored completely & went on with her rant. I would rather not block her, but I will if need be, since my heart was racing for 2 hours after the whole mess. I even sent her a photo of dad with a message from him that he loved her and that he'd be okay, this was a slight setback and nothing MAJOR at all. It went unanswered. I feel exhausted, emotionally & physically, and like I should not have to 'defend' why my own DD is here to support me for a week when this girl NEVER offered to lift a FINGER to do ONE DAMN thing for him or I EVER. The only thing she 'does' is cause grief (at 31 years old) and throw monkey wrenches into everyone's lives all the time. That she is EXCEPTIONALLY good at, everything else, not so much.

I hope you all had a good Mother's Day and a relaxing Sunday.

Lea and cxmoody: Just read your updates on DH and will continue to pray. You are doing an amazing job, Lea. Glad that your RN DD is of course so helpful. Happy Mother's Day. What a great Mother's Day surprise your daughters and daughter in law had prepared for you!
Please don't give another ounce of your preciously needed strength on your step daughter's acrimony.
Hugs.💛

((((((((Hugs))))))))).

Hi Lea,
So I take it the daughter of dh is angry because your actual daughters are helping with her actual father. I’m sorry, but I can’t see why she is anything but perpetually grateful about this. It’s not like she’s being pressured to do anything is she.

People are complicated is all I can say. Sorry you are getting flak from her.

Re: stepdaughter - oh heavens, that's all you need.

As you're reluctant to block her (though you can always unblock her again when you feel better able to cope, don't forget), I suggest you scan-read her texts to check there isn't anything you need to action (there won't be) and then immediately delete. Do not read them thoroughly enough for comprehension.

Forgive her. She's young enough to think it's reasonable to demonstrate fear and pain by hurting someone else, and frankly you have far more important things to give your energy to.

Thanks Lea for updating us about the Good, the Better, the Bad and the Ugly. You know the SD, so you know who she is and always has been, but I well know the feelings in your heart and in your stomach when one of the kids gets at you. FOR SURE! And last thing you need now. Do keep setting boundaries with her and let her know that the LAST THING you want to do now is limit her contact with you as she needs to be in the know, but that you WILL DO THAT if this continues for your own protection. You have been respectful. She needs to be, as well. I know you are BOTH under a lot of stress, but hers honestly cannot compare to yours.
The Mother's Day treat is out of sight GREAT; what a beautiful thing.
Pulling for you both.

Something FISHY is going on with the SD..........her DH called Chuck a little while ago but did not leave a voice mail. What? They are at a funeral in another state about 13 hrs from here. So Chuck called her directly when the DH did not respond to a text; he had a feeling they were ON THEIR WAY HERE TO ARIZONA! I, by the way, am in bed with diarrhea today which is a real slap in the face to my husband who STILL has not had the freakin' bm we're praying for, the poor soul. So he gets Psycho Betty on the phone and she repeats all that toxic waste to HIM that she texted ME yesterday! Who does that, to a man who's in the hospital, lying in bed nauseous and trying to pass a huge amount of impacted stool in his gut?????????

He told her "I love you, I will be fine, someone is coming into my hospital room now so I've got to go, goodbye." Bravo!!!

She said nothing about coming out to AZ but really, who knows when psychosis is at play? In one of her ranting texts to me yesterday, she said something to the effect of "Oh so all I need to do is take a covid test and I can see my father, got it, your rules, ok, great." I feel seriously angry that she would choose to stress HIM out like this!!! Turning her meltdown into his anxiety issue, as usual. I hope the 3 of them do NOT SHOW UP HERE!

And all b/c my DD is here HELPING me and HER FATHER out, like PeggySue said. Speaking of guilt........if the shoe fits. Chuck grew my DD up since she was 12 years old; she considers him her 2nd dad as well she SHOULD. What's wrong with that? Nothing.

CM: How do you delete texts? I've never had the need to do that.

On a happy note, all the tests have been CANCELLED for Chuck; so no biopsy or MRI+ or scans. His liver enzymes returned to normal (for 2+ days now) so it's possible the increase in rejection meds stabilized him. At least for now.

Thanks for all the support everyone. I feel grateful for a safe place to vent.

Lea, only Chuck can now tell his daughter that if this continues her calls will not be tolerated by either of you and she will be informed by someone on a phone tree daily. She is bullying her Dad AND you. It is some nerve and honestly you already know this is personality disordered behavior. As you said WHO DOES THIS???? The honest answer is only someone ill.
Were I you I would tell her she will get updates daily and you will not be responding to her otherwise. And as to her Dad he is going to just have to tell her to come to a full stop with this. Only he, sadly, can do it.
I warn everyone that every pain med gets an accompanying stool softener. When I had my mastectomy the constipation from two vicodin was the worst part of the entire thing.
Hope things come out (literally) OK.

5.9.22

1:00 PM
Still no movement with the constipation; DH is feeling nauseous and a bit poorly today but very relieved that ALL the tests have been cancelled because his liver labs are now back to normal. They're getting him up & walking for motility and preparing to use other methods to get his bowels to 'wake up.' 
He'll stay in the hospital until this matter is resolved and until his white blood cell count gets back to normal. The infection may have to do with the constipation issue and be related; the doctors still aren't certain the source. The severe abdominal pain is gone now, thankfully.  
Please send prayers for this situation to resolve itself SOON so DH can come back to the hotel & continue his recovery. 

I will write another update later tonight.

Praying for both of your guts!

Continuing to pray for you and Chuck. And I do hope SD and husband don't show up. Once when my husband was in the hospital, I did have to request that certain people not be allowed to see him. It wasn't family, just "frenemies." You might need to take that step and I know it will be even more difficult since SD is family. I'm so sorry you have to deal with this.

I sure hope the next update is that you've stopped going and Chuck has started.

Lea and cxmoody: Thank you for the updates. Prayers for you, Lea and your DH, Chuck.

5.9.22

7:30 PM:
No news to report; nothing has changed. Still awaiting an xray to see how backed up Chuck is at this point; none of the laxatives have done a single thing to relieve him thus far. The plan after the xray is to keep loading him up with more laxatives.......
He's feeling very frustrated, understandably so, and ready to come back to the hotel, but not w/o a resolution to this situation, I'm sure.

So sorry! I keep forgetting to read your updates. I am on a tablet and Discussions are under the Questions and always clicking arrow for the next page of questions. (Don't know the layout on a laptop)

Seems things are going pretty well. Nice what your daughters did for you. Sorry about the SD. You can put your phone on "Do Not Disturb" Then select to get from contacts only or receiving no calls at all. Really, your husband is being too nice. He needs to tell her to stop the little girl stuff. I know, he isn't up to the drama. But when he is feeling better, she needs a good swift kick. 🤣

Every
time Mom was in the hospital they felt she should be going everyday. So it was Senna, stool softeners, bulk laxatives. Nothing worked. They finally used Milk of magnesia and wala!

Sent up a prayer.

5.10.22

9:00 am
Last night's xray revealed what appears to be a bowel obstruction or ileus in DH, so an NG (nasal gastric) tube was inserted in his nose early this morning. This tube pumps fluids out of his stomach and a LOT was removed in 2 hours, relieving his pain. He's in much better spirits as a result. It's not uncommon to have such a thing happen after a 12 hour intubation as the bowels go to sleep. 

A CT scan is scheduled for this afternoon and contrast is going into DH as I type. His white blood cell count continues to increase which can be due to bowel inflammation as he's not sick enough for the doctor to think it's anything worse. We'll wait for test results and another blood culture to indicate otherwise. The last culture showed no sepsis.

That sounds like the docs are on top of this!!

CX thanks for telling us Lea's update on the positive bowel obstruction.

5.10.22
2pm
The CT scan shows an infected abdominal abscess which is leaking fluids into him and causing the rising white blood cell counts. Along with an ileus in the upper intestines. They are doing exploratory laporotomy surgery now (began at 3:15 pm AZ time), going thru the original scar site and cleaning out the infection and repairing any duct issues that may exist. I don't know if they're able to address the impacted stool situation or not; he may have to pass that on his own once he gets out of surgery. The procedure should take 1 hour. 
I'll update again later.

Lea and cxmoody: Prayers continue for your DH. Sorry to hear the CT scan results.

I have been traveling this past week for my future daughter in law's wedding shower so I haven't been keeping as up to date as usual on your post. Houston and LA truly deserve to be in the top 5 worst traffic cities.

My thoughts are with you and I am always hoping you find the strength you need in dealing with your husband's recovery.

I have had 2 bowel obstructions. One required surgery and the other resolved itself. The tube down the nose is incredibly unpleasant. I hope your husband finds relief soon. Always thinking about you. I leave for home today after a week at a pace that really made me feel I was entering a phase of dementia.

5.10.22

4:45PM

DH is out of surgery & did very well; there was a duct leak b/c the donor was very young & had very small valves. It was repaired w/o the need to divert the ducts; his infection was cleared up, and he's expected to make a full recovery.

2 drains were placed again in his abdomen and will stay there for a week this time.

He will have to pass the stool himself but the doctor doesn't see an issue with him doing that on his own now that he doesn't have a serious infection going on.

DH will probably be in the hospital for an additional 5-7 nights so they can make sure he fully recovers.

Thank God this is behind us now. Thanks for the prayers and well wishes, everyone. We appreciate it.

I also have had 2 bowel obstructions. One required surgery.

The NG tube indeed was the worst part.

I am praying with great understanding for you both.

Wonderful news on the successful surgery!

Such a roller coaster ride for all of you. The Mother's Day surprise sounds wonderful - I've spent time in that same kind of room at an extended stay Marriott, with the inconvenient layout and the insipid decor. SD sounds like a pip.
Glad that Mayo found the problem and fixed it, and that Chuck will be in the hospital until everything is in good working order. Hope you can get some rest yourself, so you feel better, too.

So glad the source of infection found and taken care of. Poor Chuck with yet another surgery to get over.
Keep those stool softeners on board whenever possible. They are an enormous help in preventing the cemented bowel.

5.11.22

12pm Wednesday

DH is feeling quite a bit better after the surgery last night. His NG tube got clogged and had to be removed/ replaced so the doc said he could leave it out for an hour, to take a break. During that time he walked 2 laps around the hospital 5th floor! Not much pain at all, fortunately. He is not allowed any food or drink due to the NG tube which will be in for the next several days at least. The tube will continue to pump fluids and bile from his system. The doctor is very happy with his progress so far. 

He had an ultrasound this morning. No news on the results, but no news is good news around here. 

He's refusing narcotics so the doc okayed a dose of IV Tylenol which is about $1900 a dose, stupidly, and something they HATE to prescribe. The last thing he needs is more constipation from narcotics though. 

The doc said it will take a couple of days for his bowels to start working again so let's hope for the best on that. 

DH’s spirits are pretty good considering he can't eat or drink 🤔. He now has 2 more stuffies to add to his collection....a dinosaur that heats up in the microwave and a jackalope. We all get one for each time we're admitted to the hospital. Let's pray for NO MORE stuffies to be added to this collection.  

I will update later if there is anything to report.

Continued prayers for recovery for Chuck and no more side trips to surgery. Peace to you all and distance from SD. ((((((hugs)))))

5.11.22

The NG tube is back in and Chuck is snoozing on the recliner presently. A biopsy was taken during surgery, it shows no sign of rejection. The EKG is good, all other tests are looking good too. Potassium is high and Lasix is in the IV now to bring it down.

Feeling grateful today.

Alva, Chuck is NPO with an NG tube, meaning he can take no pills/stool softeners, etc. Nor are they able to put any lax's into his IV or NG tube at this time, nor would any of them really absorb into his body if they were able to anyway, that's what the doctor told us. He said that Chuck's body will move the stool out in a few days on it's own, now that the infection has been cleared out. When he's off the NG tube, then they can start giving him lax products and stool softeners once again.

2 tries it took the nurse this time to put in a new NG tube, then she tried to get him to take PILLS with water beforehand at the PA's suggestion which is ludicrous. When the PA mentioned it to the doctor (after DD & I balked about it), he looked at her like she had 3 heads; Chuck is not allowed to drink or eat anything which includes water, so why would he be allowed to swallow pills by MOUTH? Mayo Clinic or not, an ADVOCATE needs to be with a loved one as much as humanly possible when they are in the hospital b/c a LOT of mistakes happen. That's my take away from all this.

Chuck has not been complaining at all about the NG tube, actually; it's not bothering him much except the installation of it, and two tries doesn't help, and three installations now in all. Hoping that there are no more 'clogs' and this one can stay in for the duration. The man is literally exhausted, can't keep his eyes open, has had no food or drink at all since Friday, and no real food to speak of for days before that, so I'm not surprised. I don't know how he's doing it, frankly. Once the new NG tube went in finally after 7 HOURS w/o one, it pumped out about 200 ml of liquid from his gut which wasn't too bad, fortunately.

Hoping for a good day tomorrow and more good news to follow. DD and I are exhausted; and she's rooming with me now b/c her hotel room week has come to an end today.

8pm Wednesday 
💩🚽💩🚽💩🚽😀😀
Here is another stuffie to add to the collection! A well timed gift from Chuck's son and daughter in law! How hilarious is this??? An appropriate reward for a job well done!

HOORAY!!!!