Life loves the liver of it.
Three goods, three bads, I’m sad. Long post ahead.
Goods:
1) GM is 100% cancer free. Her mohs surgery went very well and she has 9 stitches on her right forearm that already seem to be healing nicely. We are to leave the bandages on until her followup on Wednesday with the surgical oncologist. In order to keep the bandages in place I have put a cut up tube sock on her right arm and she really gets a kick out of that. This morning, as I helped her make her 3rd trip to the bathroom in under 2 hours, she asked me if she would soon start wearing a shoe on that hand. heh.
2) We are home. We were released late yesterday after a HORRIBLE hospital experience. But if I am focusing in the the good right now- I am just going to celebrate that we are HOME.
3) In an entirely separate issue, but equally perceived as good, I finally relayed news about Snork to some people that I worried about- in terms of their reaction. The news was met by one with complete happiness and joy, and by another with stunned confusion, but seemingly pleasant. Next up is GM’s 87 year old cousin.
BADS:
1) The hospital stay was awful. Usually we have amazing nurses that are fantastically helpful and kind. If we ever encounter an issue with a nurse it is in getting them to understand that GM cannot speak for herself and that Mother & I must speak for her. This hospital stay was beyond that. I can’t even get into all the ways that things went wrong. Nurses being snide with Mother, having to BEG, cry, demand medications, GM having not one, not two, but THREE psychotic breaks because her medication was not given to her in time. I’m talking it was 3-6 hours late in every instance.
All of GM’s Alzheimer’s symptoms are pretty much mental at this point. Agitation, depression, aggression, loss of reality. She is on a very powerful, but very effective and fine tuned cocktail of meds that have taken us three years to perfect. If she misses a dose- just one- we lose her. And by lose I mean she has no idea who she is, we are, where she is, how to speak and she begins to bite, scratch, kick, hit…you name it.
So imagine that hell is happening when a nurse finally comes in. The nurse not only gives the meds to Mother to give GM she actually LAUGHS when she sees GM trying to bite Mother’s fingers. She laughed and replied, “oh! She is mad at you!” ha ha. It was just bad and before we were checked out (after I raised the most GIANT scene you can imagine) we were sent some nurse liaison lady to try and smooth things over. Didn’t work. Now I will say that we did have two nurses that were amazing, kind, and loving towards GM. But the night nurses get no praise.
2) Diagnosis for GM: Primary biliary cirrhosis. FUCK. Basically it is an autoimmune disease that is causing her liver to attack itself. GM had an ultrasound and a CT scan and both showed not only a very, very bad liver, but also a very damaged spleen. Dr. Liver is going to take on GM’s case. Based on GM’s age and the advancement of the disease there is not much that can be done. She is on a new medication that will help prevent a massive bleed-out and that is all we can do. Thankfully she doesn’t currently have any of the symptoms associated with this disease- she just has the horrible blood work and horrible liver.
I’m sure I could go on about how shitty and fucked up this is, but I know you guys get it. I mean having the Alzheimer’s is horrible, then having to deal with the cancer was pretty crap, but now this? What the hell, Universe. Leave my Grandmother alone!
3) Guess who also has wonky blood in regards to liver function? Mother. There are some studies that show that this particular kind of cirrhosis is hereditary. Dr. Liver is also going to be doing a full workup on Mother and IF there is something going on we will hopefully have caught it in time. It freaks me out to no end to think that Mother could have this going on as well. She already has the autoimmune issues with her MS, having something else would suck infinity. (I don’t seem to have any liver issues, thank goodness. When I went through the horrible hepatitis C scare last year Dr. Liver did a massive blood workup on me and my levels are all fine.)
So right now I am sad. I am tired, I feel defeated, I feel crapped on.
GM was chatty every time she needed to get up and already she has forgotten that she was in the hospital. That is a VERY good thing. I am hoping that by going directly back to her normal routine she will be, well her version of normal.
Wednesday we have the followup on GM’s arm and then the next week both GM & Mother have appointments with Dr. Liver. I will probably hunker down for a few days and be quiet on the internets. I can’t even find the words to explain how upset I am about all of this.
What is it with night nurses? the night nurses during our hospital stay w/ Klove’s c-section totally gave me a complex about staying in the hospital. Even the wonderful day nurses couldn’t make it better.
I’m so sorry about the horrible health news. I’ll be keeping your family in my thoughts.
sending you all loving hugs….. i would follow up with a letter to the director of the hospital… and tell them what shits they are…. im glad you all are back home!
Oh Cali I’m so sorry…..thinking of all three of you.
aw cali i’m so very sorry you all had to go through that hell. those f*cking nurses make me sick. thank goodness GM is cancer-free and hurray for dr. liver. at least you have the comfort of knowing she is in the best hands. please oh please take care of yourself and the snork. you can’t always be superwoman. i wish we could all come out there and give you a day of pampering. if anyone deserves it, it’s you.
sending love
Oh, Cali. I’m so sorry, my friend. I’m sending you good, positive vibrations and love.
I am so sorry that you got so many bads. I will keep you all in my thoughts. We love you.
Oh, Cali. It’s just too much. Too much all at once. I didn’t know that your mom had MS, too. I’m thinking of all of you, Cali.
So sorry you and your family find yourself in the universe’s crosshairs yet again. Thinking of you all.
I will say that night nurses tend to have more patients than day nurses. They are chronically understaffed. Not excusing them for being snide or being late, though. We work in these conditions every day and still have to give the best care. However, as a nurse myself, giving meds 3-6 hours late is not acceptable. The rule is a half hour before or after they are due. I suggest writing a letter to the Nurse Manager of the unit. She won’t know unless you bring it up. Explain to her what that lateness meant for your grandmother, and for you as a caregiver. The Nurse Manager will be able to investigate and determine why that happened and hopefully rectify it for the future. Believe me, those letters, especially ones that name names, are paid close attention to.
I don’t feel good right now. Mind if I just focus on your good news for right now? yay for all the good news!
~hugs~ I’ll come back for words of encouragement on the bad.
I just wanted to say I’m so, so sorry and to let you know that yet another person out here in the internet cares about you and yours.
I am SO sorry you had mostly awful nursing experiences. But very glad you are home.
Oh Cali,
Big virtual hugs to you. And lots of cups of tea. Tea always helps me when things to to shite…
xx
J
I agree w/Mrs. Spock who suggested documenting the bad nurses to the nursing supervisor. If only to help the next poor patient who might be in similar straits! To me, that’s some good coming out of a bad situation. Glad the surgery went well, but saddened to hear about GM and Mother’s livers! We’ll keep the prayers and good vibes going!
Sending love and hugs.
So much, I don’t know where to begin.
Hang in there and hold on tight to the good stuff.
Thinking of you all.
Blessings to you, GM and Mother…. I’m so sorry to hear about the terrible treatment at the hospital and the additional bad news. Thank goodness you are back in the comforts of home.
That is just maximum suckage. I am so sorry Cali! It would be so nice if you could get a little smooth sailing.
Glad you are all home. I’m sorry about the bad diagnosis for GM and hope that mom’s is ok. Hang in there and hugs to you.
Sorry about your bad nurse experience. As I nurse myself, I can say every nurse has a bad day now and then, but meds that late are not acceptable. I also agree, send a note to the nurse manager. Sorry to hear of GM’s liver problems. Glad to hear she has a specialist on the case. Your GM is very lucky to have such a caring family. Big hug to you Cali. You are one special chick!
Ugh. I’m so sorry. I know that won’t fix anything, but I’m sorry and I’m being pissed right along with you. *hugs*
Yeesh. it is shocking how awful some nurses can be. I have some lovely ones, and some awful ones. So sorry to hear about the liver issues. i hope that Dr Liver (husband of dr OB!) can get thing squared away. Take all the time you need.
Sorry to hear about the liver issues. You are in my thoughts and prayers
Sending all sorts of positive thoughts your way….
I hate that GM had such a terrible stay in the hospital. My Mother is a nurse in a Coronary Unit and has been for over 25 yrs. As many of her patients are very ill and often heavily sedated she relies on the family for information about the patient, she welcomes an active participation by the family. I’m glad you are all home and safely tucked in and that GM is on the road to recovery. My thoughts and prayers continue for you all.
Oh, Cali, I’m sorry to hear about all the bad. Still reeling from the PBC diagnosis, seems bizarre in someone so elderly, still, it sounds like Dr. Liver knows what he is doing. Holding you tight, over here.
Oh, and yes, night nurses are WEIRD and STRANGE. This tends to be the rule rather than the exception. Some of them don’t see the light of day for literally decades, and like it that way. It’s almost like they’re a different species from day nurses – I also think that writing a complaint – if you’re up to it – is a fine idea.
x
It is just miserable to have bad nurses. Especially when your child or GM is in the hospital. You and your mom are amazing advocates for GM. I’m so sorry you all had to go through this. Experiences like that scar – hopefully not GM, but you won’t forget, I’m sure. Take care, Cali.
Cali, I’m so sorry that things have been rough lately. I’ve said it before and I’m sure I’ll say it again: you are an amazing person, and have amazing strength. You are doing a wonderful job with your GM, and you should be very proud of yourself that you are able to be there for her and take such good care of her. Please just make sure that you are taking good care of you, too. It’s easy to give all of yourself to caregiving, but it’s also all too easy to become overwhelmed with the stress and grief and sadness that comes with it. Every once in a while, you have to take a little “time out” for yourself, even if it’s just a long walk or a pregnancy massage. Big hugs.
Oh, honey, I’m so sorry for all of this crap. Sending massive hugs.
I also agree with Mrs Spock. There is no excuse for meds that are so late. if you ever find yourself in that situation again, perhaps your doctor can write that the family may give medications from home, given by the family. I am not sure if this is allowed in every hospital, but is done in ours, at least by a few docs and the nurse just documents what the family tells her if she doesn’t come in to witness when she is notified.
I have worked with many patients on complicated drug cocktails and there is nothing worse than getting off schedule. I am also on one drug that must be taken at 6am and at noon and it irritates me to no end to find it brought to me every night at 9pm when I am hospitalized, night after night. Regardless that I have explained and gone through and had the order changed every day. I understand. I am glad you are all home, but try to find time to write that letter and name names, because many things happen on nights that never get discussed during the day.
Damn. Why does the universe insist on shitting on your family’s livers? I hope your mom is ok.
I love GM’s comment about wearing a shoe on her hand.
I’ve been missing, due to my little boy being very sick and in hospital…he is much much better now and on the way to a full recovery thank goodness. Any way…that’s why I haven’t been around here.
Wanted to let you know you that you three incredible women and that teeny tiny little boy growing within…are in my thoughts. I hope you all recover quickly from your awful hospital stay. I’m so sorry about GM’s new diagnosis and hope your mom doesn’t have it also. BIG HUGS
Ugh so sorry this is happening.
Wow, so much you’re dealing with. I’m sorry that it keeps piling on.
I’m glad your GM is home and cancer free, but I sure wish you hadn’t had to endure such lousy nurses. Having been a night nurse, there is no excuse for late meds – especially not that late – and definately no excuse for such rudeness to a patient and family. I’d definately write a letter to the nurse manager. And so so sorry about the liver news.
oh god, that is all so craptastic : (
i am so sorry. i’m just glad for the good parts, i.e. the lack of cancer and the being at home, but the bad parts SUCK BIG TIME. you knew that. i hope you are OKish amidst all this. sending lots of love and luck and crossed fingers. xxxx
do you and gm have the same last name? If so, I’ll put her on the refuah shlemah list at shul.
Love you.
Just got home and checking up, oh hun I am so sorry for the shit care. I have been there with a woman who I cared for eons ago and it is just so awful to get bad care, and the laughing…..infuriating. OBLIVIOUS!!!
So scared to hear about her liver too, and mom’s. Sending much love your way that things go smoothly.
The good news is great. The bad news? I’m so sorry. xoxo
I am so sorry about the liver.
But I will say that the comment by GM about wearing a shoe on her hand gave me a wicked smile. I love her.
Geeeez.
I’ll be thinking of you.
So, so sorry about this shitstorm. All of us out here on the interwebs are pulling for you and your family.
Oh no – so sorry to just be catching up on this now. What horrible news about your grandmother, and scariness for your mom too – this must feel awful!
Take care of yourself and I will be sending good healing thoughts to all of you…