Pure and Utter Crapitude

The last few weeks came crashing down on me yesterday. Darb, Steve and Angela met Denny and I for breakfast and came home with us to visit before having to return to Delaware (OH) and Buffalo respectively. My aunt walked up the street to visit also and then my favorite (ex) sister-in-law dropped by so it was a nice way to spend the morning but after they all left I crashed and burned. The cold/flu/whatever that I have been fighting really kicked in with all the achiness, coughing, snotty nose, etc. and I gave in to it for the rest of the day.

Today I'm better, which is good since I have to meet with an estate attorney to start all the legal aspects of dealing with Mom's affairs. Busy-ness is good; I think less that way.

L'Chaim

Today is my mother's memorial service. Friends and fellow RVers Bill and Diane sent me this and I thought it was appropriate today to share it with you.

Peace be with you.

Something Different

Stole this from Kim to use because I'm out of words for a while.

I'm Learning

I'm learning that one of the best gifts Denny and I can give our sons is to have all our affairs in order, documented, in lists, in folders, easily locatable (a word?) in one place, instructions clear and concise, all "i"s dotted and "t"s crossed. Of course, that will never happen, but I can see now that it would be a terrific gift that would help in what is a very difficult and emotional time. One should be able to grieve before you have to deal with all these details.

Maybe it's better this way, because when the grief really hits, I'm not coming up for a while I'm afraid.

Blogging buds, I love you all. Every comment buoys me. I really will come stalk you all when we finally get back on the road again...kidding!

Maybe ;)

It's Cryin' Time Again

Last night I lost my mother and my best friend.

Thank all of you out there who kept Mom (and me and Denny) in your prayers and thoughts.

Good Morning

A gift for you this morning.

The Next Step

A representative of Hospice of Dayton met with me today to talk about palliative care for my mother. We discussed some options and for now have worked out that Mom will be released from the hospital tomorrow pending her surgeon's approval and moved to Hospice for evaluation by their staff. After a few days if it's deemed reasonable, we will move Mom home where I will care for her with the assistance of a variety of Hospice staff. While Mom would prefer to go straight home, she agreed to go along with this plan (hey--anything to get out of the hospital!)

Yesterday I arranged with Mom's attending physician to stop any further intrusive testing. We are keeping her on her oxygen, her antibiotics and her TPN, although the goal is to wean her off that as it is the possible cause of the yeast infection. She is no longer being monitored continuously and I have stopped nagging her to eat. From this point on, I will return control to Mom (and boy is that hard for a control freak!) She still has no appetite for solid food, although my brother's girlfriend brought Mom some of her homemade cheesecake in the form of tiny tarts and Mom said she ate two of them so "hurrah!" to Deb for bringing those. Mom is only able to whisper now for some reason--her oxygen levels are fine but I guess her energy reserves are shot. Last night I took her her favorite robe and soft throw and she seems to be sleeping more comfortably in them.

Me? I've succumbed to a cold and have started to droop a bit. But tomorrow's another day.

Normalcy

Normalcy

Pronunciation: \ˈnȯr-məl-sē\
Function: noun
Date: 1857
:the state or fact of being normal

Normal: everyday, humdrum. How I long for humdrum. How nice it was the other evening after a long day at the hospital to run to our favorite pizza joint for dinner and just sit and people watch and make snarky comments about the behavior of other people's children instead of discussing Mom's condition. How relaxing to sit for a few minutes playing mindless games on Pogo rather than make phone call after phone call updating friends and family about how my mother is doing on this particular day. How enervating to discuss the possibility of going on a cruise to the Panama Canal or spending another month at Myrtle Beach rather than thinking about the medical decisions I'm going to have to make in the not-so-distant future.

I had an almost normal day yesterday and it felt good.

At Yeast We Know

The yeast has been identified as candida blagrata. Still unknown is whether the fungal infection is coming from the TPN/PICC line or if it is the type of systemic fungal infection that affects the heart valve. The infectious disease doctor wants to try using a different type of antifungal medication (voriconazole) to see if it has a better result than what he's been trying. Mom had a echocardiogram the other day but it didn't positively rule out an infection to the heart and the doctor doesn't want to subject her to a Transesophageal echocardiogram as her health is too fragile. So he's going to try the new drugs, then remove the PICC line (and thus also removing the TPN as a possible source of infection) once Mom can swallow pills safely (it's a problem right now) and then if none of that works, will diagnose it as a systemic fungal infection of the heart valves by default and we will transition into making her comfortable from that point on. Whew, what a sentence that was!

At least today Mom was more talkative and alert. There were still periods of confusion and off-the-wall comments, but she ate some ice cream and pudding without too much nagging. Mom still is refusing all solid foods, saying her stomach is growling too much. We tell her it's because her stomach wants food, but on this point she adamant. No solid food. So be it.

I'll cross my fingers for another good day tomorrow.

Back Down

Last night I spent the night at the hospital again; Mom's temperature was back up to 102 degrees and she was very agitated. Neither of us got a lot of rest, but she made it through the night okay and even was able to eat a few bites of ice cream this morning. I went home to get some sleep and returned this afternoon to find that she was once again kind of out of her mind and very hot and agitated. Her infectious disease doctor explained that the central IV line cultures were clean so her current PICC line was not the source of the yeast infection and that the results of the echocardiogram hadn't been returned yet. I questioned him about the yeast infection effects on her heart and he said that if the infection was in the heart that she was not a candidate for valve replacement and that the staff would simply make Mom as comfortable as possible. That was a kick in the stomach.

A little later the pulmonary doctor came into the room and he was obviously taken aback by her condition. He pulled me aside and we discussed Mom's history a bit and the fact that we had altered her original DNR orders. His advice to me was to reinstate the original orders as a kindness to my mother. Another kick in the gut.

So for the moment, we wait to hear what the echo results are to know where we go. A simple yeast infection means treatment at a local extended care facility and an eventual return home. Or there is the other.....

It's the Yeast of My Worries

The doctors ordered more blood work because my mother started running a fever again and this time they found yeast in her blood stream. Not a good thing to have to fight when your body is already worn down from trying to recover from surgery and other infections. So there will be no going home for a while. Today Mom was really agitated when I arrived at the hospital and was making no sense at all when she said something. She finally fell into a more restful sleep around 10AM and the surgeon who wanted to examine her incision actually walked away to allow her the rest. That was a surprise.

The Megase hasn't kicked in yet to increase Mom's appetite, but I got her to eat a few bites of cheesecake at lunchtime. The infectious disease doctor wants the TPN line out and a feeding tube in but not until she gets another abdominal CT to make sure there are no abscesses there. It just seems like it will never end. It's hard to watch Mom try to sleep when she seems so miserable and I can't do much to help, other than to hold her hand and make soothing sounds.

And what goes through my mind are the lyrics "My heart went up, down,
Like a merry-go-round and 'round,
Like a falling star, down, down,
Oh, oh, oh, dum-didly, dum-didly,
Dum-dum-dum dum." (Do you know where that's from? It's Dickey Lee's "I Saw Linda Yesterday")

A Picture for Mom

Since my mother is in the pulmonary care unit, there are no fresh flowers allowed as they are possible allergens. This evening after dinner I glanced out the back door at Mom's house to look for Patches when I saw a flash of yellow in the corner of the yard. There among the dessicated remains of last year's flower bed I discovered two small patches of these yellow flowers which I know that neither she nor I planted. I've been gradually adding perennials to Mom's flower beds in the backyard as she has gotten older and weaker and less interested in tending the flowers. This way the flowers simply come up every year and she doesn't have to mess with them too much. We've tended to purchase lavender colored flowers, along with the occasional white or pink plant that tickles our fancy. Some make it, some don't, as Mom has a heavy growth of wisteria that she loves that climbs the privacy fence and it tends to shade a lot of the flower bed. So these cheerful little lovelies were a pleasant surprise and tomorrow I'll take a print in to show Mom to brighten up her day. And maybe I'll even figure out what they are for when she asks their name.

Looking Ahead

Yesterday was a better day for Mom. She was able to move to a chair to attempt to eat (eating is still a problem) and she stayed awake a tiny bit to talk to my aunt. When Mom dozed, she actually went into a restful sleep.

The doctors are still clueless over the source of infection and they have backed off the antibiotics to avoid making them ineffective. All we can do is wait to see how Mom's body responds this time around.

In the meantime, Denny has a bad cough that I'm afraid will turn into bronchitis; it's something he gets occasionally when we return to Ohio. So no more sharing of glasses and kisses for a while as I don't need to catch whatever he has and take it to the hospital with me. Bummer.

In an effort to make life seem more normal for us, Denny has decided to start making a spreadsheet of some interesting sounding places to eat from the "Diners, Drive-ins and Dives" show on the Food Network channel. While we won't travel to an area simply to eat somewhere, if we happen to be in or near a town on the list, we'll make a point to try it out. Yesterday I used some of our rewards points from our credit card to order a metal detector, figuring to use it to look for gold flakes and nuggets when we're geocaching out in the mountains of Arizona as there is still gold in them thar hills. The two of us decided that we would be optimistic about returning to our lifestyle of travel and this is one way to create some new goals for when we once again hit the road. I have no clue as to when that will actually happen, but happen it will.

One step at a time.

Downward Spiral

I guess I jinxed Mom by saying how well she was doing yesterday. This morning I received a call from Mom's nurse saying Mom had spiked a fever again and wasn't doing well. She's receiving the most potent antibiotics that she can get by IV and they just don't seem to be working. Lab tests show negative for c.diff, urinary tract infections and infections in the central IV line. Chest x-rays shows fluid in the lower lobs of the lungs but her lungs sound fairly clear. The CT of her abdomen didn't show anything obvious so the doctors are stumped. There is talk of more tests and more labs but Mom is so tired and so worn down that I don't know how much more she can handle. I've told the doctor that there won't be anymore surgery and he agrees that she isn't strong enough at this point and he's willing to make her comfortable and leave her alone if she doesn't improve soon. And I think that's where we'll leave it.

Today was a family day; one of Mom's sisters stopped by with her husband and Denny came to the hospital when I couldn't hold it together during a phone call. Later my sister and brother stopped by along with my brother's girlfriend. I think Mom appreciated it, but she was in and out of consciousness all day and very obviously in discomfort if not distress.

The bad days are beginning to outnumber the good.

On the Upswing Once Again

Yesterday when I arrived at Mom's room she was awake and getting ready for a sponge bath. Yay! Her fever was down and I managed to talk her into sitting up in the big chair in her tiny room where she stayed during breakfast. Mom even managed to walk out into the hallway with the physical therapist when he arrived. Double yay.

There's still no word on what caused the massive infection to return, but a CT seems to rule out another abscess or leakage in the colon. The doctors seem to be leaning towards blood poisoning/infection from the central line IV but the lab results aren't back yet for that. Whatever caused it, my mother is once again in a weakened state and she'll have a longer hospital stay because of it.

And so the fourth week begins...

Long Hours and Anger

Yesterday I was very encouraged about my mother's condition; she was alert, watched some TV and read a little bit of the book I brought her. She ate several bites of each meal and made sense when she spoke.

Today? Bad news. Mom's condition deteriorated once again. She wouldn't wake up, was once again a little out of her head and with six blankets on her was still chilled. It was obvious to me that something was badly wrong but I couldn't get anyone at the hospital to realize it or to care. I was *this* close to standing in the hallway outside of Mom's room and screaming at the top of my lungs to get someone's attention. The nurse finally called the attending doctor for me who realized that Mom was worse than yesterday and that something was not right. The doctor noticed the ostomy bag had not been emptied and I explained about the bag leaking badly two separate times last week, each time leaching into area of Mom's surgical incision. Blood work was ordered, blood gases were done as well as a chest X-ray and the doctor said she would order a brain scan if nothing was found in the blood work. Well, apparently infection was found after I finally went home (I was too close to exploding at the staff at this point) and according to my brother who took over in the afternoon, Mom is now back on heavy duty antibiotics. Blood gases were in the normal range with no word on the blood work but Don's girlfriend (a nurse) seems to think sepsis is a concern. So here we go again. And I'm wondering how much of this could have been prevented if the staff had dealt with the ostomy bag situation properly the first time.

The picture above? The Dayton skyline at night as seen from the hospital parking garage, something I've become quite familiar with over the past three weeks.

Appalled

Hospitals are for healing. That's what I thought. Today I was shocked to see how this particular hospital seems to be doing the opposite for my mother.

I've already mentioned she had a colostomy. That means she has to wear a bagging device to collect her body wastes. The device consists of an adhesive disk called a "wafer" that the collection bag snaps onto, rather like a Tupperware lid seals to a bowl. This evening when I was getting ready to move my mother to a chair so she could eat her dinner I noticed her bedding was wet and thought she had an accident. It turns out her wafer was loose and leaking into her open incision and that someone in the hospital had papertaped the wafer to Mom's skin rather than put on a new wafer. WTF??? There were no ET (enterostomal) nurses available to put a new wafer on, nor were any of the more experienced burn unit technicians around (they had all gone home for the night). My brother was told that someone would fix it in the morning. GAH!!! It's almost as if the staff no longer cares about Mom's care now that she is scheduled to be released next week. To say I am furious is a bit of an understatement right now.

Okay, deep breath. But if an infection develops in the incision because of this you'll be able to hear me all the way to Maine.

Stay tuned.

I Hope It's the Drugs

Today when I was trying to get my mother to eat her breakfast she kept staring over my shoulder. I finally asked her what she saw back there and she said "your dad". "My dad is behind me?" I asked. "Yes", she said. Okay. Never mind the fact that my father has been dead for twelve years. So there is still weirdness going on even when the nurse hasn't given my mother any pain medication. That's a bit worrisome considering the fact she's an alcohol abuser.

Mom slept through breakfast today when I was there and according to the nurse she slept through lunch and she was trying very hard to sleep through dinner when I left (it was time for my brother to be the nagger). Social services has sent the paperwork to a local nursing home that can and will handle Mom if she still needs the TPN IV for nutrition. The hospital would prefer that Mom was eating solids when they release her but I think they will release her regardless. The nurse was able to get Mom up to walk to the hallway today which is good, but the mental confusion she's still suffering has me really concerned. But it seems I'm the only one who is bothered by it (maybe it's just the idea of my dead father looking over my shoulder--ya think?) I'll see what happens over the next couple of days. Friday would be the earliest the hospital would release her according to Social Services with Monday being more likely. So Mom is improving physically but declining mentally; not the win/win situation I was hoping for.

On the bright side, our temperatures are supposed to get into the 50s tomorrow. I'm ready for sunshine, daffodils and the smell of freshly turned earth in the flower beds. Yep, I'm definitely ready for Spring.

Sleeping Beauty

Five phone calls and two Cosmos into my evening and I'm thinking I need to get something into my stomach here. Mom slept the day away and I had to oversee a scary-weird PCT (personal care tech) who was male, semi-gay and WAY too weird and rough for my liking to handle my mother's bath and personal care. I realize times are hard but don't hospitals have an obligation to vet these employees? Wow. Okay, I need to eat.

My brother had to leave the hospital because the hospital room is claustrophobic (you have all of 18 inches of room to move around in, literally). He and I have been estranged for years, but he is finally coming around and we are connecting. So something good is coming from all this. Mom is still only semi-conscious today even though she hasn't had dilaudid since 1AM this morning and she's still saying things that scare me. I'm hoping that the sleep she's getting will do her good, but the fact that she's only aware for about ten seconds at a time worries me. But her heart rate is better, her oxygen levels are decent and her pain levels are down. I just don't want her to choose sleeping over life.

We'll see.

Again, many thanks to those who have written with love, care and support--I love you guys!

One Step Forward, Two Steps Back

This week my emotions have been on a merry-go-round. We get good news followed by bad when it comes to the status of my mother's health. Friday she was moved from cardiac intensive care to pulmonary care and she was almost chatty at times, albeit a bit goofy from the new pain meds. Yesterday after my Indiana cousin and her daughter left, Mom went into afib. At one point during the visit Mom didn't know who the three of us were, telling the nurse she assumed we must be relatives since we were there visiting her. There was talk of "people out to get your dad", someone might be after Datha (my cousin), gila monsters and that I should put the little tequila bottles in my purse when I go. Okay, so some of it was funny, but most of it was worrisome because I had no idea of where all this stream-of-consciousness was coming from.

The good things this week: being moved, being allowed solid foods, having her digestive system start functioning. The not-so-good: the cath stays in, the afib, the mental confusion and my impression that Mom might start to give up soon. She is very, very tired.

This journey's final destination might not be where I thought it was.