cxmoody Posted April 2022
Lealonnie and Hubby: Liver Transplant Journey
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Also, I've been a long-time sufferer of vertigo (on and off since 1998) and had it daily for a full year after I had covid in May 2021 (it literally just went away 2 weeks ago). If your DD's fiance has nausea (most probably) I highly recommend asking doc for prescription of Ondansetron (Zofran) which is a tiny, dissolvable anti-emitic pill that will take care of the nausea for 8 hours without making him/her drowsy. Stay away from Dramamine or Meclazine, IMHO. Nothing addresses the dizziness but the constant nausea is the worst part. Zofran's only side effect is that it makes you a little thirstier.
My DH had a massive post op infection. At 3 weeks out, which is when they usually raise their heads. He had a sponge left in him, which festered away. It was not pleasant, and he was far sicker than with the original surgery. I know we let it go a couple days too long, he just did NOT want to be in the hospital. A fairly straightforward operation and cleaning out the wound and he went on to slowly recover.
And, truly, for my DH, the fever (103) and PAIN were the worst. We struggled to keep him out of pain. I was amazed at how much Morphine, Dilaudid, and Fentanyl they can pump into the human body! And antibiotics of all sorts.
He did come out of it well, but was in quarantine for 1 week. In the hospital for 2-1/2.
It was really only a slight setback. He stayed on the regular post transplant meds and was able to taper down off the prednisone.
I have to say: your transplant team seems so much more aware than ours was. We were preparing to move to Omaha to wait out his transplant, b/c we never once felt that his transplant team cared one iota about him. Just one doc, thank goodness. I felt utterly alone and spent a LOT of time crying in an empty room b/c I felt that his post op care was so terrible.
Maybe that's why my SIL is a liver doc. He saw firsthand the poor care and my distress and felt it was a problem that could be healed.
The rough throat from being intubated will go away. The infection will be cleared. You are strong and tough and it will all be OK.
Lea-you get your rest and time outs. You have so much ahead of you--stay healthy and strong. I had to tell the nurses to not let my DH have his phone until after 7 am. I had to sleep and he would call me at 5 am, without fail, and want me back at the hospital to sit with him while he slept all day. Luckily, the staff would kick me out at 11 pm, DH would have preferred I'd stay overnight. The hospital was a 45 min drive from home. I was chronically exhausted, and that wasn't good.
Praying for you today that he feels better and they find the source of his infection.
Hugs-
MidKid
Thinking of you, pulling for you both.
On my way to the hospital now; thanks for the support from one who's 'been there/done that' and had a rough ride with less than great care for your DH.
Thanks to everyone here for the support, it means a lot.
I am sorry about Chuck's kids, and I am afraid we show ourselves at our best or at our worst in these times of stress. Hang in there, don't let yourself get pushed by all that.
So grateful for your updates and I know we are all coming to "discussions" first these days looking for the updates. You are both in my heart.
Happy Mother's Day to you and your daughter (s)!
You are doing a great loving act towards your husband, hang in there. And take a moment.
5:30 PM: I just got home from the hospital where they're keeping DH at least another night. He's very constipated, is what's going on. No blockage was seen in the CT scans, fortunately. The laxatives are not working so far to clear up the issue, neither are enemas, so they're keeping up with the routine to get him to clean out his system naturally and to get his GI tract to 'wake up'. He also has an infection somewhere in his body but they can't pinpoint where; the antibiotics (IV) are working, though, and he's NOT septic, so that's good. Fluids are given IV along with the antibiotics, and we're hopeful to have him back to good by tomorrow.
I spoke with his nurse Winston about stronger laxatives like Milk of Magnesia which is the only thing that worked for me to 'get things moving' after hip replacement, and they're sending it to his room as I type. Please Lord, let this do this trick for the poor man.
The good news is that his liver enzymes have normalized for now so the biopsy has been called OFF! I am so relieved about that I could jump for joy. His vital signs are also great, so that's wonderful news for the infection situation as well.
On another note, DD’s fiance does have Covid (only symptom is bad vertigo) but she (and we) have all tested negative. I brought it up to DH’s doctor who is not concerned; we see about 100 people per day here at the Mayo Clinic; during labs, at the hospital and in clinic. He said Covid is here with us to stay now, unfortunately, and that with the amount of people we interact with daily, we're bound to run into several who are Covid positive. It's inevitable. So while it was unfortunate that DD’s fiancé did contract the virus and that DD was exposed (and has had it herself in the past), it did not cause a problem for DH.
Several liver transplant patients in our group here at the Marriott have gotten sick from the hospital; one with Covid and another with bronchitis; both have recuperated well with no lasting issues. We are fortunate to be in the hands of the best medical team in the world, I think.
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.
***********************************
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.
Please don't give another ounce of your preciously needed strength on your step daughter's acrimony.
Hugs.💛
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.
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.
The Mother's Day treat is out of sight GREAT; what a beautiful thing.
Pulling for you both.
Hoping you had a good day!
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.
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.
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.
I sure hope the next update is that you've stopped going and Chuck has started.
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.
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.
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.
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.