Only two weeks left!

Please PLEASE consider donating to the American liver foundation. We are so far from our goal and there is so little time left. This really makes a difference. Please click the link below and share this blog/link. I am praying for a miracle. I pray that a treatment or cure becomes available before it's too late for my mom. The only way to get there is to fund research. Thank you for reading and helping in any way.

I'll be at the river springs charter school fundraiser this Saturday promoting the walk, educating people on liver health, and accepting donations. I'm trying to gather some small bribes for people who donate or sign up (Starbucks drinks, target $5, Walmart, McDonald's, etc). Feel free to stop by and say hi. Give a quarter. Seriously, anything helps and you'd be surprised how fast it adds up.

Go Team Kathy Team Page - Liver Life Walk - American Liver Foundation

PT Guy Leads to Mom's Temper Tantrum

Our marvelous PT guy stopped by tonight to visit with mom and check on her. She was happy and joking with him. The second he left, she started throwing a temper tantrum and screaming like a little girl. She must have missed him. =P

The shingles rashes are drying up and healing. Her knees will hurt until the antibiotic leaves her system. One of the major side effects of levaquin is joint swelling and pain, but we didn't know that and the hospital has a habit of not paying much attention to what they prescribe and passing off all of her aches and pains. They blame the fibro and never really think of anything else.

We have an appointment with the GI next Friday. I'm hoping to clear up this salt issue and find a way to keep the ascites down and keep her serum sodium levels normal to avoid toxic shock.

I met with the wonderful ALF contact and borrowed the banner and got some brochures about the liver life walk and liver health to have at the school fundraiser. Some people have expressed concern about the walk in light of the terrible events in Boston. The liver life walk takes place inside the zoo, doesn't attract as much attention as the historical Boston marathon, and the zoo is only open to walkers during the walk. It's horrible that people were killed and injured, and I pray for them and their families. I do find it inspiring that the city of Boston refuses to let terror win, refuses to be greedy with supplies and help (how many stories did you hear about injured walkers being helped and even saved by Bostonian strangers?), and that the entire country is backing Boston. It seems that Boston refuses to let evil deeds force their faith in humanity into hiding. My college advisor was from Boston, and I really can't imagine anyone holding her back when she wants to do something. I hope we have a few people walk with us in May and show us how Boston does it.

They will totally pass me, btw, because I walk, not run. If I start running in the zoo, you should start running, too, because I'm being chased by some huge critter that broke free from its habitat.

Shingles

Add it to the list. She broke out in a rash in the hospital and finally got doctor confirmation today. Luckily for her, she doesn't have the extreme pain that is typically associated with it, but it explains the last several years of seemingly random pain in her back that she thought was her kidneys failing. The outbreak is almost over, so her skin is drying up and healing. Too late for antivirals, so there's nothing to do for it now. At least we know what to do next time.

Fundraising Efforts in Place!

Today and tomorrow, Pat & Oscar's in Temecula by the pond will be helping my team (Go Team Kathy!) to reach our goal of $1500 before the walk in May. Just take a copy of this flyer to P & O's and hand it to the cashier when you pay and the American liver foundation gets a percentage.

These things always scare me. What if nobody shows up? What if I didn't get the word out enough? If we don't sell more than $100 in food and drink, alf gets nothing...I have to find other ways! The good news is that I also have one of these food fundraisers set up for Sunday the 21st at O's in Orange, and I got a free booth at a school fundraiser to promote the walk. My contact at alf (Alexandra...she rocks!) is going to meet up with me and give me brochures on the walk and on liver health, and a banner for the booth. The school is expecting 400-500 people, so I hope it's a large turn out. Right now, we have a lonely $20 bill to my team's credit for the walk, and that's just not enough for me! BUT I got a local paper to put an add in and it's supposed to be put in the murrieta patch too. They say we caregivers are notorious for not asking for help. I'm not just asking - I'm BEGGING and praying!

Now let's see if I can post the flyer here. I'll post the one for the 21st soon.

Homeward Bound

Medicare made its decision, and sided with the hospital. She comes home tomorrow morning. She is still having delirious episodes that aren't consistent with HE, so I'm concerned that she won't be compliant with her meds.

I spoke with the doctor at length today. She basically said that Mom is headed to a skilled nursing facility, and very soon. She actually wanted me to put her in one now. She said that Mom can't manage her meds by herself, and since it's always a bad idea to have a family member manage them (i.e. Mom won't let me and we'll just end up fighting, cops being called, etc), and we can't afford to hire a third party for the amount of care that means, placing her would be the only option. She also said that Mom's on too much medication and mixes them in a way to cause CNS depression (central nervous system depression...low blood pressure, low oxygen, heart rate drops, etc). She said that part of Mom's delirium was caused by low sodium, that it's a common problem in liver failure because of the water pills, and will get worse over time.

I agree that Mom's overmedicated. The rest...I don't know. I don't know what to do, and it's far too much to think about right now and too large of a decision for just Mom and I to make. I cleaned up Mom's room, fixed the stuff she threw everywhere, and organized the house quite a bit. Moved furniture. I'll pick up Mom at ten so we'll be out of there by noon. I pray she's lucid enough and takes the antibiotics.

Hospital Stay 2013: Day 4

I spoke to Mom, or rather listened to her babbling, for almost an hour this morning. She is still more delirious and speaking more nonsense and exhibiting more confusion than her normal; it even seems worse than yesterday. She speaks gibberish and slurs words when she's sleepy or not quite awake, but it usually doesn't last more than a half hour. This is lasting longer and concerns me. She is still having problems swallowing, but the day staff doesn't want to admit that. It's so odd to me that they could sleep at night knowing they are ignoring a patient's complaints and problems, especially when it means she risks malnutrition and not being able to take necessary medication. They say we can just have her eat pureed food and crush up her pills. Don't they wonder WHY she can't swallow, or worry that it could be indicative of a larger problem?

The medicare appeal is being processed, but I'm not sure how long that means Mom stays. The nurse today kept saying, "you stay here for two more days," but I don't know if that means two days from today or two days from when they thought she should've been released, which was yesterday. I asked about the swallowing eval, but the nurse said she hadn't had it done and she "swallowed her pills this morning just fine." I hate intermittent problems. It's worse than having inconsistent car problems that never act up during a mechanic's test drive. I just wish they actually listened and believed the patient and the family who sees the patient often enough to establish a baseline. Mom was crying last night when the night nurse came on because she is the only one who seems to believe mom or myself, or at the very least, she empathizes and doesn't call Mom a liar. She said it just felt like a weight off her shoulders that someone believed her. Unfortunately, that nurse is neither a doctor nor will she be Mom's nurse again as she is off duty for a few days. Mom is in the hands of the doctor who, I pray, opens her eyes and ears to new information and thinks about Mom's symptoms more than once. Today, Mom told me that they told her that her tests came back negative and her CAT scan is now clear. I'd love that news if I believed it. Mom doesn't recall any tests being taken today, and I was there all day yesterday, so I know they weren't taken then.

Today is about prepping the house for Mom and praying that the doctors take a second look and figure out why she can't swallow and why she is so out of it.

Hospital stay update: day 3

Long story short, Mom became delirious and couldn't walk, open her eyes, or even follow commands like "walk", so I called 911 Monday. She was admitted with what appeared to be a severeUTI that was bordering sepsis.

Yesterday's word was that she has an infection, but they don't know where. They ran a few tests, but still didn't give her any meds for her liver.

This morning she was told it is actually a minor bout of pneumonia, though it affects her to the point of hospitalization. This infection is so small that they can't hear it with a stethoscope. They had to find it on a cat scan of the lungs, and it's just a wee bit on the very bottom in the back of the left lung. I find this odd considering that she has been complaining of pain in the right lung (although she was grabbing her arm pit, so I didn't connect it). The pneumonia seems to be from her aspirating in February during the EGD. The doctors either didn't know or didn't tell us, and I'm still waiting for a report. Aspiration is basically a long word for the accidental deposit of gut fluid into the lungs. Very acidic and very dangerous. She is lucky to be alive.

The doctor tried to discharge Mom today, but she isn't well enough to be home yet. She still can't swallow half of the time, and has more delirious moments than "her normal", and they expect her to take antibiotics at home when I tried to tell them (1) she can't swallow pills without choking, and (2) she gets combative and hostile when she is in one of those moments. I'm afraid she'll get just as bad as monday again and we'll end up right back in the ER. I tried explaining this to the doctor, but it seems that once a decision is made, the discussion is closed.

I filed a grievance with her health insurance and medicare, so she is hospitalized until at least friday pending medicare's decision. I don't know how her insurance works, so I don't know what to expect there. I'm hoping she is more clear headed by friday, or that they keep her until they figure out why she is crazier than usual. It is so frustrating and infuriating to have her ignored as a patient and myself being dismissed as a caregiver. Nobody listens to me or her, she doesn't get the treatment she needs and deserves, and it's hard to maintain a calm demeanor and be respectful of medical professionals who do not reciprocate, but freaking out and yelling or tossing around threats does not motivate them to help her. I've been quite calm and respectful today, though I don't believe they deserve it, and I'm proud of myself for that. My mom deserves for me not to piss everyone off and have them take it out on her.

I do have to say that Art at Juice It Up is her current hero and the night nurse, Nurse Katie, has been awesome the entire time. I wish I could say the same about the rest of the staff. She has been denied meds even though they had me bring them from home. The first two days seemed promising for treatment and diagnosis, and now I fear they, too, have given up on her and have washed their hands of her.

I'm trying to keep her spirits up and tell her it will be okay. I'm passing out brochures for the liver life walk with mom's card attached in hopes some of them will walk or donate or join team kathy. It's rough and, franky, scary to have her so close to the end. She easily could have died when she aspirated, as well as having an infection advanced enough to cause sepsis. We are very lucky. Her guardian angel is tired.