The lung ailment that followed the fires took its toll on both of us…we’re trying to recover. But the air is clearing and colder, which will help the firefighters. Even our local News station and Dish Network have suspended their contract feud to bring the news channel back on to advise people of evacuations and hazards…kudos to people using their heads and their conscience.
I’m making progress on the book—but some of it consists in sitting and staring while the brain works.
The tank is looking better and testing better, what’s more.
I need a break. But there’s no time to take it. I’d love to take a drive up to Missoula and stay the night. Maybe we could manage one to Pullman, for lunch. Jane and I need to talk over an aspect of the current plot, and a break for lengthy discussion might be good, except the Prius is in recall for a computer issue, and we don’t want to get stranded. *I* need to get my driver’s license renewed. And I stepped on my reading glasses and bent the focus all out of true, while I managed to outright lose my driving glasses…sigh. I need to go to the optometrist and get new ones anyway, because the prescription is changing.
Meh. We might risk a drive to Pullman.
Talked to one of the other doctors this morning, he said that if her blood pressure and urine output don’t improve within 24 hours, he doesn’t think she’ll make it. Her BP was something like 60/47 this morning, but when they used a Doppler reader, the systolic was 120. So they put in an arterial line to monitor her BP, and it was upwards of 154/60, which is much better. Now, they’re gradually lowering her BP, and will be giving her a diuretic, balanced with the medication to raise her BP….(yeah, it’s complicated), so she’ll produce more urine and relieve some of that fluid buildup. The second doctor, who is her surgeon, said no to the 24 hours, he said it will go on until they can’t do anything more for her. Her nephrologist agrees and the two of them agree that a diuretic will help her.
I was in there at 7:30 this morning (they called me at 7:00 to tell me her BP was dangerously low), sat by her bed, held her hand, talked to her, she opened her eyes, I’d stand up so she could see me. She responds to us, and when I asked her to squeeze my hand, she can do that and keeps doing it. So, I know her mind is still there. I talked, I said my ABCs backwards (she always thought that was funny), sang, spelled odd words, etc. Dad’s been in, two of my younger brothers (including the estranged one) were in, and my aunt, along with one of her daughters, and my niece came in…..so, she’s hearing voices that she knows, not just strange sounds, and different voices from different people at different times…..the surgeon seems hopeful, although it’s still very early.
I should probably let this thread rest as it was supposed to be about CJ and Jane recovering from their sicknesses due to the fires, exhaustion, etc…..
Joe, I sincerely hope your mom pulls through and makes a full recovery. It’s good your whole family is checking on her and that she still responds.
we had a family conference with the doctor this morning. My sister-in-law, who is a Nurse Practitioner was there and asked most of the questions (thankfully, since she knows which questions to ask).
Mom’s liver functions are whacked up. Her clotting factors are screwed up, too. Plus, she’s retaining fluids.
They’ve got her on Propofol to help her tolerate the tube in her throat, two different broad-spectrum antibiotics, she got 2 units of whole blood, a unit of plasma, she’s also getting Vitamin K.
Her readings today were fairly good, and the doctors think it’s a slight improvement. The emphasis is on “slight”. She’s holding on, but we really don’t know if she could slip back and that would be the end. To that, we’ve been trying to prepare, but as long as her vital signs are showing, there’s always hope.
We’ve limited the time that visitors can be in the room with her (exceptions are my father, me, and certain other members of the immediate family). My aunt is limited to 15 minutes, and she’s still trying to push that and feels it doesn’t apply to her because that’s her sister on the bed. Well, it DOES apply to her, and we specifically mention her name to the doctor because she doesn’t leave and let someone else into the room. Two visitors, there’s a damned good reason why they instituted that rule. The rooms are only about 10 X 10 feet, with the bed, the meters, the other assorted medical devices, and the staff trying to work on her, that doesn’t leave much room for “spectators”. When they need to do something that requires two or more staff members, I’m out of the room. It’s also a matter of patient dignity, even though Mom isn’t necessarily aware of what state her clothes are in, or who’s in the room, I’m not going to be a source of embarrassment to her if she pulls through. I’ve been accused of being standoffish and having an attitude because I leave the room when a third person comes in. Well, yes, because staff has to be able to work. We’ve also limited the visits to those of us in the immediate family. No friends, neighbors, friends-of-friends, etc. She’s in a Critical Care Unit, ferpetesake, these people, while well-meaning, come in off the street carrying who knows what….suppose they have a cold or one of their kids has the flu? That could be fatal if they pass that to Mom. So, no, I’m sorry, it’s the way it has to be, and if they’re offended, they’ll have to be offended.
It is terrible to feel useless. Find them tasks. Let them do for you so that you can be there when you need to. Dishes? Dirty clothes? If your Mom is like my Mama, she would want you to be cared for. Pose it as a gift to her. That will soon sort the curious from the sincere. Remind the sincere that prayer works from anywhere. Set your aunt to recalling your Mom’s favorite foods and sorting photos to sift out what are her fondest memories of your Mom, and let her show and speak of a photo during each of her daily visits. The favorite foods will need to be made when your Mom is recovering at home. These stratagems will give you breathing room and make everyone else feel less useless. You may tell the curious that your Mom needs to rest for 18 hours a day. Too bad if those who are not willing to ‘help’ feel insulted or left out!
Tommie’s got some good suggestions.
It’s hard, real hard. Fortunately when we’ve had to cope with the ICU it’s been a small family, but having one in the lot who isn’t coping with the rules is a serious problem. Hoping the staff can apply a little gentle suasion.
I’m glad you have a medical professional in the family who can make sense of and interpret the doctors’ directives for the jargon-challenged in the family. When my father was in and out of the hospital so often, my Aunt Janet, a retired nurse, was an invaluable help to my mom in figuring out what was going on and making decisions.
As for the people who won’t follow the instructions of the hospital staff, if they are truly interested in seeing your Mom get better, what is their issue? Doctors are not pulling rules about things like needing room to work if you Mom has a sudden problem out of their butt!
S-I-L is wonderful to have around, and she knows what to ask. The head nurse for the past 2 days has been super, as well, because she explains things in English, makes sure we understand what she’s talking about, and if we have any questions, she lets us know.
Tommie, you’ve got some great suggestions, and I appreciate it, but Auntie comes to the hospital and camps out…that has been the complaint, then starts giving directions to the nurses about what Mom needs, etc., and that’s not her place. The nurses have a standing request from my father to call me first, and that’s what they do. This way, if he’s asleep, I can make the determination whether or not to call him and wake him up. Sometimes, he has to take a sleeping pill just to get a few hours of sleep.
Spoke with the lead doctor today, her numbers are improving, and if nothing untoward happens, we’re getting ready to move her to a long-term acute care facility. This particular facility occupies the 6th floor of a major hospital, and if something happens, we don’t have to transfer her to another hospital. Her nephrologist also came in and talked with us, and he’s happy. The added bonus is that both her cardiologist and nephrologist work in the hospital we’re considering.
Sorry that it sounds like your Mom will not be coming home anytime soon, but the care facility sounds like an excellent compromise.
Dr. did a CAT scan this afternoon (I offered him the use of all three of mine), and all looked good. So, they’re planning to move her to the acute care facility tonight……not sure if they’re going to be there when they said (which is like the 4th different time of arrival to pick her up).
I’ve got my fingers crossed for your Mom, your Dad, you and your family!
Hugs, Joe, and you camp out on this thread as long as you want. We care, and you are on our mind.
Dad called this morning and said he was scared to go up there by himself, and would I please go with him. Of course! So, I parked my car at his house, and we drove his car up to the hospital. Mom’s got a handicapped placard for the car, but Dad’s got a cane that he needs in order to walk, so we “cheat” a little bit.
We got up to the acute care facility, got to meet the nurse who was caring for her, then saw Mom for a while, until the paperwork patrol showed up, and we went into a conference room to sign papers. Dad’s got a copy of everything he signed. There was one paper I told him not to sign, which is the one that says he’ll agree to mediation if there’s a legal issue. Absolutely NOT! Because the hospital would be picking the mediator, and also where the arbitration would be held, and that would be costly and time-consuming on him. So, because it was voluntary, he decided not to sign. I have to take Mom’s Medicare card up with me tomorrow so the proper paperwork will be turned in, and she’ll be assured of them paying the hospital.
Everyone at the hospital has been super good. I’ve met her lead doctor, as well as the infectious disease/wound specialist, and they think things look good, even though she’s still very sick. She’s in a good place, I’ve looked at the credentials of these physicians, and they’re impressive, so I’ll place my trust there for now.
Good that she’s out of the hospital ICU now, and that you trust the acute care facility and her nurse and doctors there, and she has a good chance to start healing and recovering there. Thank you for letting us know.
Even in distressing situations, there’s some humor to be found….this is not to embarrass my mom, but it was funny.
Dad asked me to tell her about the new month’s picture on the calendar, and when I did, she nodded “Yes”….when I’d ask her a question (always a yes or no answer), she’d respond.
She was lying there with her eyes open and just staring, so I said, “Mom, blink your eyes.”, she did blink, slowly at first, and then she kept blinking a little faster…..I think she was teasing me, even under the influence of the sedative….
That’s progress in my book, she’s got a sense of humor….now, if they can just get rid of the excess fluid, she won’t be so uncomfortable. There’s so much it’s literally seeping out of her skin.
I’ll be taking Dad up tomorrow morning – this time we’ll use my car…I get almost 3 times as much gas mileage as he does……and gas prices went up almost 40 cents a few days ago……
Up and down, and no different today.
The nephrologist wanted to put her on dialysis to help remove some of the fluid in her system and relieve some of the pressure on her kidneys. When they started her on the machine, her blood pressure dropped dramatically and they removed the machine. She was also leaking blood through her stomach tube (the one that comes out her nose), and they were concerned about her stomach bleeding and called in a gastroenterologist. He was going to do an endoscopy, but her blood pressure was too low, so they didn’t do it and called us back to spend her last hours with her.
One of the consulting cardiologists came in and decided to give her something for her blood pressure to raise it without making a hard burden on her heart. They’ve also given her medication for pain, and so far, her numbers are doing well. So, now we just don’t know whether she’ll pull through the night.
The doctor might try to put her on the dialysis machine again tomorrow if the numbers hold tight through the night. We don’t know yet if we should stay or go home (it’s 35 miles one way), because if they call us during the night, we can’t get up here that quickly.
I’m emotionally drained, I’m tired, I’m just beat, but I’m trying to hold myself together for Dad, because this is even more draining on him. I know the staff here is doing the best…
Waiting for improvement (or not) is always rough. ::hugs::
Oh God, Joe, this is so tough for all of you. Hugs indeed and remember to treat yourself gently and well, and those about you too. Feeling for you all, Raesean
I’ve spoken with the cardiologist, the pulmonologist, and the nephrologist was in while I was at lunch. The cardiologist thought that my question about dialysis was a good idea, and he called the nephrologist. The pulmonologist came in earlier and said that he would like to wait until Tuesday and if she wasn’t breathing better, that he’d like to do a tracheotomy to try to get her off the machine. Since the ventilator is also causing problems with irritating her, they want it off and let her breathe on her own, unless she needs ventilator to assist.
At the moment, they’re hooking her up to the hemodialysis machine to see if they can get rid of some of this fluid that’s filling her up. Since her numbers have been steady through the afternoon and last night, they thought they’d give it a try again. Maybe it will relieve the pressure that’s on her heart and kidneys.
Hugs, Joe. Hoping it helps.
They were able to remove about 567 ml of fluids from her blood before her pressure dropped too low. The nephrologist cut off the dialysis and her vitals moved back up to where they should be.
Now, my brother brought up a point that I hadn’t considered. Whenever we talk about dialysis, or some other procedure that might prolong her life, she shakes her head violently and her heart rate goes way up.
I wonder if that’s her telling us that she wants to go. She’s got a DNR order if she flatlines, but we don’t know what her wishes are if it’s something like this.
I tried to explain it to my father on the way home, but he misunderstood me from the very beginning and wouldn’t let me get a word in edgewise, so I just shut up and let him talk until he ran down, and didn’t bring it up again. He had asked me to wait until tomorrow morning if it was something bad, and so I’m going to do that, but I dread the conversation.
If she truly wants to go, there is nothing legal we can do to stop her under the laws of the State of Ohio. I’m fully aware of what needs to be done, but it’s getting up the courage to do it, even though it hurts horribly. It’s hard enough when it’s a pet that you let go, but dammit, this is my mother, and it’s horribly difficult to grasp. Sorry, I know, and condolences are welcome….I just need to be ready to let go when the time comes.
Oh Joe, what a horrible time for you, and even moreso for your father.
Also, how very frustrating for your mother that she can’t talk, with those tubes in her throat, and can only shake her head to indcate No, when she is apparently clear enough to understand what you are talking about. Would giving her a notepad and a pencil in her hand work, so she can express her own wishes? If she can give you an inkling of what she wants to say or ask that way, you could clarify it with yes-or-no questions, if she can shake or nod her head, or tap/press your hand for yes or no.
My cousin’s husband is in hospital after a series of TIAs, among other damage his facial muscles are paralysed so he can’t swallow, speak or open his eyes, but if she holds his eyelids up for a little while he could write a very wobbly few words and communicate in that way, enough to indicate what he wants most.
The DNR order means she must have thought about it, and doesn’t want to be kept alive under any and all circumstances no matter what, but that doesn’t mean your father is of the same opinion or can accept it when her limits are reached. I know my parents would be split the same way, my mom wanting some dignity and capacity for joy in her life, and my dad being unable to do without her, no matter what.
Wishing you strength, endurance and patience.
I did this with my father, and it worked very well. I thought I knew what he wanted, but some relatives had put doubts in my mind. I alternated expected yes and no answers, so no question would arise that he was just nodding or shaking his head meaning yeah, whatever or I don’t like this. “Can you nod or shake your head to communicate?” Nod. “Are you in any pain?” Shake. “The doctors aren’t optimistic; do you want to continue treatment?” Emphatic nod.
Losing the same gender parent is the worst.
So very hard. Time itself can just go slow-motion and then too fast for everybody involved, and nobody has a script, no single right way to deal with this. Love each other. Give each other an extra yard of whatever they need, if at all possible.
@Joe, Aspie speaking here, please make allowances.
My mother was a smoker–well, as in the time both parents were, but Dad could quit, Mom couldn’t. She died of a coronary she didn’t recognize, to call for help. So it was sudden, unexpected, and 100% fatal. Afterward, it seemed a good thing that it was quick and 100% fatal, as opposed to 95% and perhaps something long and drawn out–perhaps as you are going through. But thinking that brought a conflict with guilt for thinking that way.
At the time Dad was in the final stage of terminal colon cancer. My step-mother and aunt said he got the idea Mom would be “on the other side waiting for him” (major delusion there!), and it was “like the air going out of a balloon”. He died two weeks later.
I was OK with it all at the time, I didn’t know I was an Aspie, but now I see its effects. It didn’t “hit me” until two years later, a “delayed stress reaction”. Now we call it PTSD. BUT, my counciler (who also didn’t recognize I was an Aspie!) had told me about such things two years delayed she saw in/after marriage counseling, so I recognized it when it came. That made it easier to take, not being an unknown surprize.
The bottom line here is, whatever comes to pass, in my experience it helps to expect conflicting emotions, and PTSD-like effects, recognize them for what they are, letting them wash around you like the surf that comes and goes if you struggle to keep your feet.
We spoke with the doctors this morning, and her vitals are declining. Her kidneys have failed, her liver is not fully functional, and she’s going into the final stages where she’s just not going to make it.
We signed the paperwork this afternoon that we will remove the life support on Tuesday after my dad gives the final say.
It’s hard, and the tears haven’t really come yet, but I’m sure they will in their time, and then I’ll grieve.
Thank you all for your support and kind suggestions.
I’m sorry, Joe. Been there.
My mother did not handle grief well, I think. She’d have annual grief anniversaries. A bad idea, I think; celebrate life, don’t cry again and again at the loss.
I have a library of memories of the very best times with my mom. Whenever I remember her, I end with one of those very good times. After a while, it’s mostly good times I remember.
Her ashes are in the Pacific. I drop by and say hi now and again.
Hugs, Joe. Good hugs. I agree with Walt. So sorry: hoping you and your dad can share those memories, on and on.
Oh Joe, I too am so sorry for the pain and anxiety and suffering you have all been going through. The hardest thing I ever did was bid my father goodbye when we knew he was dying. I even remember hearing the phone ring and secretly hoping it was the hospital calling to say that he had already passed, so that I wouldn’t have to go there and say goodbye. All I can say is that I believe, in the long run, that it is better to have the chance to say goodbye than to abruptly have a person yanked from your life, but it is hard, oh so hard and painful.
We’ve notified the hospital staff that we’re letting her go. I voted for the dialysis yesterday when my father asked my opinion, but I think he’d already made up his mind and decided that we were going to let her go. It’s his decision in the end, and regardless of my feelings, I’ve accepted that. It’s just a matter of time, and when the last brother gets here, I suppose we’ll proceed.
Wishing you and your family the best.