Best Doctor's Appointment Ever!

And it was a foot doctor! Sorry to get your hopes up, but at least this appointment today was quick and easy and we were told that her feet are healthy. No neuropathy, no drop foot, her muscles are as sensitive as they should be, and the swelling is from the ascites. The freaky nails are likely fungus, and the doc clipped them for her. I made Mom laugh when I told the pediatrist that her feet scare children. :) It was like a mini pedicure, and Mom said all she needed now was to get her toenails buffed and she'd be set. It was a pretty good day today. I got her laughing quite a bit, and we went to the bank and a lovely lady at B of A walked her through her register and helped her make sense of it. She was so patient with Mom! It was awesome. But we did get the mail today, so Mom's pondering over the blood test results that came in and the doctors are charging us separately from the hospital, so we have bills that should have been covered by insurance. She's been babbling for almost an hour on the cell (as I type, she's on speaker phone babbling...she just needs someone to listen to her...she doesn't even really need me to respond, lol) about what she got in the mail and what the different things on the blood test results mean. She seems confused as to why she has so few pages of results when they drew so much blood. G-d bless her. "They took 11 tubes of blood and that's ALL they did with 11 tubes of blood?!?"

After speaking with the clinical psychiatrists, it looks like Mom needs "neuropsychological testing". The term "psych eval" is vague in the shrink biz, which is why the group kept telling me they don't do it. Now that I know what I'm asking for, I think I can manage to get it for her. We need to rule out psychosis so that her insurance will help us with her HE, and it'll also give us a better idea of what's going on and if it's psychological or "organic" (i.e. more mental or more medical) and knowing that will give us treatment options. Speaking to someone who was actually helpful from the insurance company was a breath of fresh air, and he said that she would be able to get cognitive rehabilitation. I'm trying not to get my hopes up, but that sounds better than chocolate to me.

Also, I'm putting in a bulk order for GO TEAM KATHY t-shirts. They're $16 +tax (and shipping if necessary, but that'll be just a few bucks, nothing fancy). Proceeds help pay for my mom's caregiver expenses. We're running low on funds, so even if you don't want a shirt, please pass this along! If you'd like a shirt, please email me [birdcage_99(at)yahoo(dot)come] the size you need so that I order enough of all sizes and your contact info. I take cash and paypal (paypal takes everything and you don't need a paypal account!). Thank you for any/all help!! <3 If I can get the order in on time, I'll have them ready by this Saturday's show. Big Frog is rather efficient. 

We see the liver specialist Thursday. Let's all hope we get further with treatment and can figure out why she's stopped up lately. It's the holiday season, and things are moving slow with insurance, BUT we've got appointments for the liver specialist, urologist, neurologist, and tomorrow hopefully I can schedule some for a new therapist who works with elderly persons disorders and neuropsychological testing. It's all coming together. I really feel like things are coming to a head and we're moving in mud, but we're moving, and that's something to be very grateful for. 

One more thing: if anyone knows where to get some refreezable ice cube things, please gimme a clue. Mom's driving me batty with wanting ice cold drinks *all the time*. The ice-maker broke, and even when it was working, she dumps a half-gallon of water down the drain as soon as it gets slightly below freezing. She already drinks out of an insulated thermos (I bought her 6 of them from In-N-Out one year for her birthday), and it's still not cold enough for her. I'm hoping having these frozen things and changing them out would kill less water and keep her as cool as her little heart wants.

Bear With Me...

I'm juggling Mom, prepping for the next show, fulfilling orders, and fiddling with the storefront site. The storefront's a mess! But I'm working on fixing it. There may be more birthday vids coming - my wonderful cousin is making one every day this week. So cute! But the point here is that I may not be able to post as often as I have been lately.

Mom did cancel an appointment today. She was to have a test done, and it'd be uncomfortable and we're not sure part of it could be done working around her symptoms. The urologist wants to see her before moving forward to talk about options and if it's safe for her to proceed with the test, possibly without the instrument that would be rendered moot due to said symptoms. 

We've been invited to the caregiver's house for Thanksgiving. Mom is terrified of humans and public places right now...she's terrified of everything. But it should be fun and I know it'll be delicious! I'm so grateful to have her in our lives. Let's see if I have to force Mom out of bed tomorrow to go or if she'll go willingly.

Feel the Birthday Love!! :)

 

On top of these adorable videos, Mom got an ecard, two bouquets of flowers and a million phone calls! I knitted her a lavender-scented soap sock with a bar of moisturizing soap in it, and got her Denny's for dinner (she had a mad craving for country fried steak, so we broke her low salt diet for today only). THANK YOU EVERYONE for making this birthday awesome for Mom! Today was a great day for her, filled with love and smiles and giggles. She totally called me out on it (she said that this many people can't possibly remember her birthday unless I told them all to do it, haha), but she loved the attention and how sweet everyone has been to her today. It meant to world to her.

When dealing with chronic illness, people are often afraid and unsure of what to say or do. Sick people are sometimes depressing or make others think about their own mortality, and so they get ignored. Abandoned. That's how Mom has been feeling for quite some time. I'm so overjoyed that everyone today proved her (and me) wrong! She is NOT forgotten and she IS loved. Y'all gave her happy tears today. I have to stop typing or I'm gonna weep like a baby myself.

It's Kathy's Birthday!!

Monday, 11/19, is my mom's birthday. Show her some love and leave a birthday message! I'm sure it'll make her smile. :) 

fibered life at Home Again Consignments This Weekend!

I'll be out this Saturday with many other wonderful vendors selling handcrafted items and antiques. Be sure to come say hi and show your support! Mom's caregiver will be there making Jamaican jerk chicken sandwiches and beef empanadas (I'm almost positive) and her signature flavored iced tea, making our tent smell super-awesome and making me hungry all day.  =P

"The Monster" is my very scary lil cousin Aaron, who I love very much!I miss you Aaron! <3

The Documentary is OUT NOW! And I am Speechless.

My dear friends and family, I am at a loss for words. Literally.

I am asking all of you - everyone, everywhere - to watch this documentary. Please. 

HE*s Back: Hepatic Encephalopathy (HE) Patient Documentary | Cynthia Wade

Very Slow Progress

So far, Mom's making progress. It's extremely slow, but it's progress. She still has extreme panic attacks and weeps about things like what I'm going to do after she passes, and how she thinks G-d is punishing her by making her suffer, and how I should go live my own life and not have to take care of her. She keeps saying she tried to give my brother and I a better life than she had. She did, but right now her depression is so deep that she can't see anything positive about herself.

6 Reasons I Do What I Do Whether You Like It Or Not

I read an article today, and decided to rename it. Sometimes (too often) I find myself in the position of defending myself or my decisions. After reading this article, I realized it's true - I do waste too much energy on other people and worrying about what they think. They are not my focus. Mom is. I'm not above constructive criticism, but for those who simply try to make me feel bad and not actually do anything to help or offering any other suggestions, you go in my "not my problem" bucket.

Why I Am Who I Am

I'm putting two videos in here...the first is the trailer for the documentary that has only been released to medical professionals as of yet. It was released at ACG in Las Vegas and will be released to more medical professionals at AASLD on November 11th. It will be released to the general public after that. The second video is the reaction from the medical professionals who watched the full documentary in Vegas. I am very moved.

Also, the doctor's appointment went well today. We may have actually gotten a doctor on our side! It might take a while, but if we are persistent, Mom will get the help she needs. Please consider buying a t-shirt to help raise awareness and help us keep the caregiver. Remember that 20% of the proceeds help pay for my mom's caregiver and go to the American Liver Foundation. :)

Shortest Post Ever (In My World)

I was at Costco today (one of 8 errands this morning while I had the caregiver to watch Mom), and they had one of those big advertising thingers for their window treatments. They had a life-size cut out of what I assume is a technician who would be installing said window treatments. They also had a man standing there, wearing the exact same clothes as the cut out...and he moved. And I jumped. I thought he was a cut out. Then I laughed at myself so loud in public that people probably thought I needed padded walls. They may be right, but I said to myself, "Oh my GOSH, I need a NAP!"

Yep, I'm that tired. I had to draw a boundary today and go to my room and lock the door to take a nap because Mom couldn't stop babbling when I attempted the nap in the living room. I did get about an hour's sleep, then slept through an alarm and three text messages. I'd love to blog for another hour, but no. This is what you get. We're alive. We're going to bed. G'night and have a good morning.

Home Sweet Home

Mom was discharged from the hospital today. She came home just before 7 pm. The doctors were unable to determine if what she had were seizures and unable to determine why her mental state is so diminished. They suspect that if the episodes were seizures, they were caused by her dependence on xanax and that the hospital cut her off cold turkey. They can only guess clinically at this because there are a lot of reasons for seizures to happen and she didn't have any after they started giving her xanax. They want her to get an EEG to confirm if the episodes were seizures or not, and follow up with her regular doctor and hepatologist. They want other things and sent her home with prescriptions, but as I don't have her discharge paperwork, I don't know what those are. I should get it tomorrow. 

Jeopardy

Today's hospital visit was basically like an episode of Jeopardy; short and full of useless information. 

No info from the doctors, nothing useful from the nurses, nothing reliable from Mom. Very little improvement and she's no closer to coming home. At least she's not doing worse.

Whatever They Were, She Had 3 of Them

I tried to use today as a rest & recovery day. I slept in, took it easy, and tried to rally my immune system after the last few days of testing it. I know Mom's mood swings are swinging like pendulums, so I tried to take advantage of her hate-the-daughter mood before she swung into the needy-mother mood.

It happened faster than I thought. She called and told me she had had a seizure. She doesn't remember it and that scares her. She doesn't remember much, and isn't making a whole lot of new memories, but she can remember that her memory is failing. She's in a lot of pain, she has a massive headache, and her belly is huge. 

When I got to the hospital, I was informed that she had had three such incidents, but they don't know what they are. The description the PCA gave the doctor (complete with demonstration) made the doctor think that they could have been seizures. But only the PCA saw all three. The nurse and doctor did not. This is because they were very short-lived incidents and the PCA is what's referred to as a "sitter". They literally sit in the room unless they have to go get something for the patient, and then they come back into the room. The nurse monitors several rooms and the doctors only make rounds twice a day unless something explodes. The incidents as they were described lasted mere seconds, which was not enough time for the PCA to get the nurse into the room. Mom woke up immediately after each incident. They said that her arms were stiff and pointing slightly in front of her and her head was shaking and swiveling like she was dizzy, but she was unresponsive during the episode. She's been complaining about being dizzy all day and is a serious fall risk.

They gave her a CT scan of her head. We're waiting for a neuro consult, who will likely order an EEG. Without these test results, we don't know what's really going on. The medical team doc says that whatever this is, it isn't HE. They didn't run the CT scan til about 9 pm, so I'm assuming I won't hear anything until tomorrow or maybe even Monday on those results. The East Campus (the hospital she's in) is considered sub-acute. This means that she's too sick to come home, but not sick enough to be in the main hospital. It also means that they don't necessarily hurry and tests, results, consults, and the like are considered important but not very urgent. 

When I first got to the hospital, she was....indescribable. She had zero idea where she was, what she was doing, or what she was being told. She was physically fighting with the PCA, who was trying to help her. It was sad. I could see the PCA was trying, but she doesn't have a clear understanding of how to treat people with mental defects. She kept yelling at Mom (Mom was pulling on her cords, trying to rip off the O2 monitor and even biting at the connection). I told her that it's not a hearing problem; it's a comprehension problem. Yelling won't get her to do it. In fact, it just triggers stress and that makes her brain function drop even lower. Luckily, she wasn't there long, because it was shift change. She let Mom lay in dirty sheets, and I don't like that. The night PCA was wonderful - even reminded me of the caregiver. She changed Mom's sheets, made Mom comfortable, even moved the picture collage I put up so that Mom could see it (they had blocked the area I had taped it to with pads around her bed railing so that she can't fall out). She was very sweet. 

At one point, she told me that she was impressed with how I speak to Mom. That I'm very patient with her and how she's seen people be mean when their sick relative repeats themselves and babbles for hours. Mom did, actually, babbled the whole time and not make much sense. They gave her something to calm her down, and it worked well. She stopped trying to bite things and fight everything, and stopped saying she was "leaving the prom". She did, however, continue to babble, stutter, beg for pain meds, beg God for help, beg me for help, repeat herself about 800x, and start a million sentences she never finished. The PCA is also a caregiver and said she's seen people treated horribly by their caregiver-relatives. I told her that this part was easy; Mom's being nice. It's much harder to be calm and patient when she's accusing me of being the devil and raising such hell about me being in the room and demanding to see a social worker that they fear I may be abusing her at home and maybe she's telling the truth about me trying to kill her and hiding her meds. I said that my mom can be a tool, but she doesn't mean to be one. I told the PCA that if she was in the room the night before, she'd never believe this was the same woman. She said she's seen this before and that she believes it, and she knows it's the primary caregiver that gets the hateful anger when it needs a target. But tonight, Mom was having me read passages from the Bible to calm her down, and she was repeating prayers that I was reading her, asking God for help and strength and (kinda funny) for the doctors to have the wisdom to know what they're doing. She is mistaking the pain in her gut for hunger and won't stop eating. I brought her a JIU, graham crackers, spaghetti and chicken soup. The PCA even commented that she could tell that the caregiver was Jamaican by the look of the chicken soup, and that she bets it's delicious. And she'd be right about that. HA!

At one point, Mom made the PCA tear up. It was sweet. Mom was telling me that she wanted me to go home and get some sleep, but that she wanted me to stay. She said that she doesn't remember being mean to me or accusing me of any of the things she did the night before. She apologized and said she doesn't want to hurt me anymore and that she doesn't mean to and she loves me (insert a little crying...she always feels guilty afterward). I told her I know she doesn't mean to, and that's why I'm not mad at her. I told her that when she's that sick (i.e. she doesn't know which end is up), she doesn't know what she's saying and I know she doesn't really think that way about me. She got a hug and a forehead kiss, and then I put her eyemask on her and asked the nurse to bring her something to help her sleep. It was after 10 at this point, the rest of the room was passed out, and Mom kept saying how she needed to shut up, but couldn't. Her mind just wouldn't stop. I imagine that she has a rather humungous migraine. The nurse brought her something to help her sleep, and I stayed until she passed out, which I'm happy to say happened quicker than I thought it would. Mouth open, graham crackers and her water bottle by her side.

I'm scared. I don't know what's going on in her noggin, and the severity of her migraine and confusion worry me. I've never seen her this bad. She was like those super-old people that were in the hospice hospital with biogran. The old man who would mumble at passersby and tell women they were good little girls in school and ask if they knew his daughter Maddy. Maddy was a good little girl. I asked the doc what could cause Mom to behave this way - why is my Mom gnawing on her own fingers and medical equipment? She said she doesn't know, and that the testing should help them figure out what's going on. She did confer with Mom's hepatologist, and somehow they decided that this was her "normal" behavior. But trust me when I say that Mom hasn't been this out of it since she was on hospice in 2010, had a bad mix of meds, was up for 36 hours straight, and took a 3 am stroll down the block with her pajamas on backwards. And we're fairly certain she drank Lysol at that time. She also walked so much that the ascites fluid went to her legs and they were so swollen that her skin cracked and bled. I'm glad she's resting and calmer with me there. I hope tomorrow brings good news - at least that we know what's going on and can move forward from there. For now, it's nearly 2 am and I'm in need of my own downtime. Goodnight...or good morning. Whatever, as long as it's good.

Day 2: November Hospital Visit

After speaking to the medical doctor last night, I wasn't convinced that they would do right by Mom. Every other doctor and nursing staff says that the doctors confer with each other and that Mom's hepatologist would be consulted prior to her release. It was, after all, he that stated 3 weeks ago that he wanted her in the hospital to run some tests as an inpatient. But when I brought this up to the medical team doctor last night, she stated that "she can see him as an outpatient," and dismissed the idea of letting him see her. I called his office this morning to ask him to see her before they release her, and he said he would try to see her today. They close the clinic at 2, so I'm hoping that he can have time to go see her.

Mom hasn't been able to flush her system of the ammonia yet. She's been having problems at home (she's sort of clogged) and the medical team doc said that this is the likely cause of her symptoms getting worse. I am rather concerned that the medical doctor is not a hepatologist and doesn't quite understand HE as well as I'd like. She doesn't understand that severe personality changes and mood swings are symptoms (she keeps asking about bipolar....no, Mom doesn't have a "psychosis", she has HE!), and she says that HE isn't something that's always a problem. Like, it comes and goes. I agree that the symptoms get worse or better, but it never goes away unless you have a liver transplant. There's no cure for this, and if the medication doesn't work great for a particular patient, they have episodes like this. But it doesn't mean that they "don't have HE" the rest of the time. It's just a matter of how much it affects her at any point in time.

Mom called me a little while ago. I can tell that her body's fighting. The conversation started off angry and confused. She is convinced that I'm not letting her come home and that I have ultimatums or I'll kick her out of her own house. I may not agree with or understand everything the medical doctor says, but if her hepatologist says she's okay to come home, then I accept his decision. He knows her, he knows her baseline, he knows that she can be snippy (though she's been working on that), and that she's not normally in cop-calling mode. Am I the only one who thinks it's not a coincidence that her last episode with babble talk and a splitting migraine just happened to be days away from her calling the cops on me for not making an egg burrito? She started to break through a little bit; she told me she loved me and she knows I love her. She's starting to waiver on her severe anger, but the mood swings are still there. She still hasn't cleared her system - she's still clogged, even though they're giving her meds - and I think that once she does, her head will clear up quickly.

I hope they don't release her too soon. It'll just make things worse if she's home AND this bad. I'm hoping that we can get someone to help us when her head is clear. If we can sit down and put something in writing about what to do the next time *I* think she needs to be in a hospital, and have it in print, maybe that'll help her not to feel like she was tricked. But honestly, I don't know that she'll ever think she wasn't abused when she goes into a hospital. The whole reason of being there is that she's so confused and HE-ridden. Her hepatologist said to bring her in 3 weeks ago. She said she would if she got worse, and didn't follow through. Her PCP told her he wants her in a hospital (but he lacks the cajones to do his job anymore. I really have lost all respect for him as a person and a doctor), and the hepatologist on call at the hospital also told her to go in. She told me she'd go if we got her meds to take with her so she wouldn't go without krystalose in the waiting room and could get a head start on it. I got her meds. We went to the hospital. There was no trickery. But she's deadset on the delusion. After all that, she still thinks this was all my idea and that I'm trying to kill her. I don't know that having a plan (which I thought we had, and I was following), even having it down on paper, would make her calm down about going to the hospital. But I think having it down on paper and having it talked out and planned out with someone else (like her hepatologist or a family friend), would make it easier to explain to a doctor the next time, and they'd understand this is less of a social worker issue and more of an HE issue. Then maybe they'd understand why I still went out and bought vitamin water and brought it back to the hospital, because that's what Mom wants to take her krystalose with, even after all the horrible things she said. These people strike me as illogical. They're shocked that I'd do her such an unnecessary favor after how vicious she was, yet they don't believe me when I say her anger and mood swings are part of the illness and not normally this bad. Maybe they think I'm insane. I've been called worse...by Mom, no less. =P

I think another part of her problem is that she hasn't been taking the krystalose as she was prescribed. The pharmacy said they issued an 18-day supply. As of last night, they said she should've run out 10 days ago, yet she has a few packets left. She doesn't understand how that could be true, because she believes she's been very good about taking her medication. I don't know what to do at home with her. I can't micromanage her without her raising hell, and I can't even observe if she's taking her meds with her door closed all the time. I know that sending her home will just repeat this cycle. She understandably wants her independence, but isn't taking meds like she should and isn't able to keep her HE under control on her own....I just don't know what the solution would be here. A few people have mentioned Hospice, but when Mom's head is clear, she says she's not ready to go yet. When her HE is as bad as it is now, she says she wants to die just to spite me, and then she says that I'm trying to kill her, so she'll live to spite me. There is no easy answer here. I wish I knew what to do to, and I wish she could get on a transplant list for HE, but they don't count HE as a problem. Trust me; it's a problem.

Hospital Visit

At Mom's doctor's appointment yesterday, he told us that her ammonia level (from last Friday) was 243. That's up from 188. That's up from 190. It's supposed to be under 95. She spoke gibberish and had an ammonia-migraine at 180 in the past.

Her symptoms have been getting worse. The memory loss was down to minutes. Her speech is very stunted - she breaths for every word and stutters. She gets frustrated because she can't think of how to say the word she knows she means. She described (sort of) a disconnect between brain and mouth. She hasn't been able to understand the simplest things, or take her meds right, or control her mood swings. She gets lost as soon as she walks 30 feet or turns a corner.

Her primary care doctor is a moron and I've thrown in the towel on him and his staff. His staff has always been disappointing, but this time, he lost my respect. I don't know why he won't do anything about this, so I can't possibly understand what I don't know. He has the power to put her in a hospital for treatment and won't use it. She doesn't understand what's going on, doesn't understand why she'd need to be in a hospital, doesn't understand that this could kill her very very soon, and doesn't understand the treatment she'd have to perform if she had stayed home (thus, she wouldn't have actually taken the medication to get better and would've slipped into a coma). 

I had a crisis of morality. Of faith. I could not, in good conscious, drive her home with coma as her fate. I could not just pretend this was fine. I was nauseas with the idea of it, and the fear that she's so close to coma and that I knew I couldn't get her help in our area. I didn't know what to do. Our EMT's don't know what this is, don't know the signs, and don't have a baseline for her behavior to determine if it's "her normal" or not. I called her hepatologist's office, which was closed, but spoke to his colleague on call. He spoke with Mom. He told her to go to the hospital, and she told him how scary that was for her. She's terrified of hospitals, of the lack of pain medication, of the uncomfortable beds, and for some reason she strongly believes that things happen there that don't. I won't be descriptive, but it's stuff that happens if you're abducted by aliens; not hospital staff. I knew she wouldn't go unless I forced her, and I knew that once the doctors in the ER spoke with her or saw her, they'd keep her. No good doctor would let her walk out with ammonia that high and constant confusion.

So I drove to the hospital. She was crying and trying to convince the doctor on the phone that she would be fine at home or that they would do bad things to her in the hospital. And that she would miss her dogs. We've already been through all this; the bargaining ("I'll go if it gets worse"...but she never does), the threats ("if you make me go I'll never forgive you!"), the guilt trips ("you just want me to die, that's why you're taking me"). She is so afraid and so ill that she doesn't believe this can kill her, and today. So I drove.

And I texted our family friend, who's mother had this illness. She met us at the hospital and, for the majority of the time, was able to keep Mom calm. She pretty much bashed me the entire time ("no loving daughter would do this"), but at least she bashed me to someone else and didn't feel obligated to listen to it. And I wasn't alone, and neither was Mom. I am SO grateful that she was there!

We got there at 7 pm. They were drawing blood, ordering CT scans and x-rays, and trying to find her a room upstairs when I left at 7 this morning. I got home around 8, fed the zoo, and attempted to take a nap. Mom called me, demanding to know why I "stole her keys out of her purse". I got gas in her car on Tuesday, and the keys had been sitting on the bar the entire time, but she doesn't recall. She always thinks they are in her purse, even if nobody put them there. So I must've stolen them. I tried explaining this to her, but she didn't comprehend, and kept crying and screaming at me and demanding to know when I got into her purse to steal them. I'm up now, I'm packing a comfort bag for her, and I'll head out as soon as I eat something. It's been 14 hours since I've eaten. She still believes I did this for fun. I know she'll never understand or agree with it. I know she'll always think I took her to the hospital just to cause her pain. Even after they clear her system and get her levels back down, she'll still believe the delusions she's building now (she still thinks I kept her handcuffed to a hospital bed in our basement with my aunt....but we don't even have a basement and my aunt lives across the country, and I don't have handcuffs...she knows it was a hallucination caused by meds but she has never trusted me since). But I had to do something to help her. I know she doesn't want to die now, and this is what needed to be done to prevent that. 

The doctors are doing what they can for her, and I'll try to update when I know more. Obviously that will entirely depend on the circumstances and where I am. I don't tend to blog at Mom's hospital bedside. Prayers and good vibes are welcome and I hope everybody had a better Halloween than we did.