Goodnight

How to start?

I miss you. I didn't know my heart could hurt this much. Where are you? Could I have done anything? Did you want me to let them give you the medicine?

You had said chemical intervention was ok, did I make the wrong call?

I'm sorry, I'm so sorry.

I sang to you as you died. I sang the songs you used to sing to me when I was little. I held your hand and sang and sobbed and watched the monitors as you slipped away...as you fought.

The CAT scan wasn't good, Grandma, I was alone and scared and I tried to do what was right by what you'd told me.

They intubated you, I wasn't there to stop them. If I had been they wouldn't have been able to revive you the first time. It didn't seem right somehow that they had.

I didn't want you to go through a second time, Mom didn't want to put you through that either.

I saw you on Wednesday, I knew you weren't feeling well. I should have done something, I should have called doctors and yelled at them. I should have done something, but I didn't think about it at the time.

I was thinking about you being sick and my kids being there, I didn't want to catch anything. I can't tell you how grateful I am that he insisted on hugging you and kissing your cheek. I can picture that moment with perfect clarity.

There are so many memories. From when I was tiny to you holding my babies to standing hugging my babies tightly while we cried over your body in the open casket. It didn't look like you. We were all grateful for that. It just emphasized that that wasn't you laying there.

I didn't come to your cremation, but you know that. I don't know if it was you or God, but the sense of peace I woke with a half hour before my alarm with the deep knowledge I didn't need to be there...thank you. It stayed with me for two days. Two days of feeling the freedom and joy you have now before slowly over the next two days descending back into my reality where I can't call you anymore. Where you are and aren't all at once. Where I can't let your dirty clothes leave my side when I'm in my office because they smell like you. Where the statue I've always thought of as God sits next to my monitor watching over me as I sit here and drink margaritas and cry as I type.

I miss you, Grandma, more than I knew was possible. I ache way deep down where there's a part of me that isn't on this plane anymore.

My head hurts from crying again. I know this isn't what you want for me, but I can't help it. We were woven together you and I and now you're not here. You've moved on and left me behind. Some part of me is so grateful that you'll never hurt again, that the pain of your life the pain of your body is gone and all that's left is the pure you. But I was very attached to the voice that body carried, the look in your eyes when you laughed, the smell of your perfume...the smell of your hair, how your nails were nearly always perfect, to how it felt to have you kiss my cheek as I kissed yours while we hugged. It was in those tiny instants that we both knew each other for the unblemished being we carry within, for the God in each other.

I hugged your body and buried my face in your hair many times after I helped them disconnect you from all the machines and tubes. I can remember what that felt like, I can close my eyes and remember hugging my Grammie, the scent of your hair was new but beautiful as always, you skin was so cold but it was as soft as it has always been.

It didn't take long after I asked them to take the breathing tube out for your lips to go blue, then purple, then a deep reddish purple. Almost as though you had lipstick on.

In the time I was alone with you after your heart stopped I kept having these moment of feeling like such a small child. I felt alone and scared and I tried to wake you. I know it was unreasonable, but somehow I'm glad I tried. I know that if I couldn't wake you no one could.

It still doesn't feel real, ya know. It doesn't feel like I can't pick up the phone and call you, or drive 20 minutes and see you. It doesn't feel real except I'm surrounded by your things that you'd never have parted with....except that Mom and I have had hushed somber conversations about who gets what...except that I can't ever hug you again and you aren't here to give me list after list of things to do.

I miss you...I miss the lists...I miss everything.

Until we meet in God's hands.

-me

deja vu

Back in April I dumped on you guys about the rough time my grandmother was having. She had open heart surgery, she didn't "tolerate" it well and ended up in ICU intubated under heavy sedation for a week and thus started her long road of recovery.

As you may or may not recall (or care) I'm her Medical Power of Attorney, as such it's my job to be sure that, should she be unable, her wishes for her care are carried out. After the ordeal in the ICU she told me she didn't want two things: chest compressions (as part of CPR) or to be intubated again.

She went to a sorta halfway out of the hospital level of care place where her wishes were taken down in their "code book". Grandma was what's known as a "code 2", in other words, do some, but don't use "heroic measures" should her heart stop.

From there she moved into a skilled nursing facility where they see things in black and white. There was no "code 2" only "full code" or "no code", i.e. do EVERYTHING or NOTHING and no in between. Grandma and I talked for a long time before she decided, and yeah, ok, I was prompting a bit, to opt for everything vs. nothing. We did the paperwork with the full knowledge that she was doing great, getting healthier by the day, and we were really starting to feel she'd come out the other side of a really scary time to have the better quality of life I had assured her lay on the other side of the bypass surgery.

Last night around 2am my home phone rang. It's never a good thing when the phone rings at 2am. spool32 was still up playing on the computer and I was dozing on the couch, but I still managed to get the phone first. The voice on the other end of the line was the kind of calm that means "hear me out all the way through before you freak out". She read off a time line to me, at x time Grandma received her breathing treatment, at y time she pushed the call button and asked for Tylenol, at z time they brought the Tylenol and found her "unresponsive". CPR was started after some unknown amount of time measured in minutes and EMS was called. EMS arrived at xy time and found her to be "code blue", no pulse, no heart beat, no signs of life. They were, as the calm voice on the other end of the phone told me, giving her CPR right then and had been working on her for over 15minutes at that point.

I threw on clothes and left. It's a 20 minute drive from my house to there, but it seemed to be taking a lot longer. I started ringing my mom who's out of state visiting friends when I got in the car. She finally answered and I, little miss calm in a crisis, burst into tears at the sound of my mother's voice. A call from the house interrupted my conversation with mom (I did get it together again pretty quickly) and I flipped over to hear my husband's frantic voice "they just called back, EMS revived her, they're taking her to the hospital!" I nearly hung up on him and called Mom back, we were both torn about her having been revived.

Horrible, I know how it sounds. But it isn't really, we knew they had to have used as least some measures Grandma didn't want done and that we had no idea how long she'd been "down" (i.e. no oxygen getting to her brain). I raced to the hospital with my mother making flight reservations for this morning in my ear (*cheers quietly for bluetooth gadgets*).

I walked in and they stopped me, I got to see her for a second in between the blues and greens of the scrubs surrounding her. Nude, bloated, pale and surrounded by people moving at a constant pace. I was ushered gently to a waiting room where I made more phone calls, paced, felt dazed and wondered what the fuck the next few minutes would hold.

I could see the room where they were working on her from the doorway of the waiting area, I could hear them and I speak just enough Medicalese to know a lot of what was being said. The lead ER doctor came in and sat me down, got information from me, told me they didn't know anything. Then she gave me the first blow that made my heart sink, she was intubated and not breathing on her own at all.

I eventually got to go be with her. I held her hand, stroked her hair...noted she'd just had it permed and dyed and that it looked really good, talked to her...she was so damn cold. Another doctor came in, told me that they didn't have her on anything to sedate her at all, that she hadn't regained consciousness and that was a bad sign. She wasn't opening her eyes or responding to anything, wasn't moving her arms in the restraints. He left and it was almost on cue, she started to twitch some, like she was waking up. I smiled and felt this huge burden lift off of my heart, her arm raised on one side and I went around and held that hand, she squeezed it. Then she squeezed it harder. Someone came in and saw me smiling, I said she'd opened her eyes and squeezed my hand. They smiled back saying that was a really good sign. All I could think was, "holy shit, she's going to be ok".

Then the respirator started beeping horribly and she was squeezing the hell out of my hand then letting it go. All only on one side. And I noticed her whole face was contorting. People rushed in, working around me, telling me to talk to her, try to get her to respond. Then someone opened her eyes and shined a light into them. "Pinpoints, fixed. She's having a seizure." I helped hold her down while they shoved a bite guard into her mouth so she wasn't biting down on the tube giving her oxygen. Her poor body fought against me, I kept talking to her in soothing tones, and so did the guys working on her as their muscles strained while they tried to unclamp her jaw so the machine could breathe for her.

Then they were gone and it was just me, and her, and the seizure went on and on and on. I held her hand feeling my knuckles crack everytime she sqeezed my hand. I talked to her. I started to not feel so good.

They came to get her to go have a head CT. I asked where the bath room was. I remember asking, I don't remember getting there. I tried not to be sick, but I failed. I tried desperately not to faint on the cold hard inviting tile of the ER bathroom floor and barely managed it. I remember thinking I just needed to get to my car so I could lay down. I remember a hand on my arm, strong and forceful, then being in a wheelchair and there being all this hubbub around me. An IV, bright lights, the world wouldn't hold still. Something in the IV that burned a bit and then I felt a bit better. I answered questions and, like a good woman *gag, eyeroll* apologized. Turns out there's a form of physical shock you can go into from emotional trama. Huh, who knew. Didn't help that my potassium was dangerously low. So, several IV bags, heavy drugs, and hours later my father showed up to get me out of the ER and walk with me up to ICU to see my grandmother.

She's being given hypothermia as a treatment. They've got her body temperature around 89 degrees (f). The idea is it'll help her brain heal some, if it can, because there's swelling and damage in her brain. Tomorrow they'll start bringing up her body temperature again and the day after that my mother and I will make the decision to keep her intubated or not based on what the neurology shows.

I stood with my mother, the nurse, and a wonderful doctor outside of her room and took my responsibility as her Medical Power of Attorney and signed everywhere they pointed to. Now, if her heart stops, that's it. Nothing will be done at all. And it's my name on her death warrant, and I love her, and I miss her, and I'm just trying to do what's right by her. And my heart is breaking.

I got sick again after I signed all that stuff, but I knew it for what it was and the doctor in the ER told me how to deal with it. I hugged Grandma as best I could for all the tubes and wires then went out to Mom's car and let my body pass out. Mom drove me home, she'll pick me up in the morning.

Thanks for letting me put this here, it's sorta like purging it somehow. I needed to do that. I felt like screaming it from the rooftop, but writing it all here is less likely to get my neighbors to call the police and you guys are a hell of a lot cheaper than a shrink *Grins*.

I should also mention that I have the best husband ever. I came home today barely able to walk. The couch was all ready for me, he let me sleep and cuddle our kiddos as they wanted to. He's making sure I eat and not minding that I'm waking up as he's getting off the computer and is ready for bed himself. In so many ways my life is so very blessed.

Roller Coaster Ride!

So finally she is mostly out of the woods. Life has been hard emotionally...very hard. Birthdays, hospitals, money issues, my son's learning, a new puppy. The joys and sorrows, the ups and downs, the emotional highs and lows. Wheeee! Hang on tight!

Every time I think we can stop a moment, take a breath...that things are calming down WHAM! something else.

Today it was that the "facility" where she has been living thinks the closet they euphemistically call "an apartment" is worth $800 more a month. They have got to be kidding! The nurse there is in large part responsible for how far downhill she got before she got to the hospital. I should put nurse in quotes, too *mutters* There are few people in the world that I genuinely feel disgusted by, she is one of them. I'm a better nurse than she is. We've taken to referring to her as "the angle of death".

Thank God for family. I can't say that enough...thank you thank you thank you! The new crisis started at about 9:15 this morning and after 45minutes and a few phone calls we had a solid plan of attack. The "unacceptable" check for her rent that prompted this morning's unpleasant phone call was stopped, vans, trucks, and hands were lined up...and tonight her belongings find their way into a storage unit.

I think the hardest part was going to see her today knowing this news had to be imparted. She took it well after her initial reaction (which, in all honesty, was the fault of the tack I initially tried to take). Sitting there in her wheelchair next to her hospital bed, listening to TV, eating her wonderful smelling lunch we sat on either side of her and broke the news. "I'm not moving" became "I really don't want to move" and then "That's ridiculous! We can't afford that! I trust you two, I know you'll find a nice place for me."

What a ride so far...

Glasses

I hit the doors of the ICU dead on at 10am and, of course, they were still closed. I did my usual pacing round and round, watching where my toes hit in the center of each square tile. After a few minutes someone walks out and I slip through the double doors as they start to close and bee-line for her room.

Amber, her nurse, is sitting on her perch looking over a long graph...folding it out and over. She looks up as I come to the room and smiles in greeting, I smile in return and look in at the silent figure on the bed. I turn to ask my usual question, but Amber is already on her feet, looking into the room at the monitors...she gives me the run down...how the night went, where things are now, goals for the day...hopes. A lot of the bad stuff gets left out, instead I tend to hear "well, her blood pressure is pretty much the same" which translates to "we can't get her blood pressure under control and we don't know why and there may be a problem". Thankfully, though, today there were very few of those and her blood pressure was on the "looking good" list. Amber smiles at me again, a sort of familiar trusting and reassuring smile, and quietly says "she'll be happy to see you".

I walk in and she opens her eyes, I smile and take her hand...juggling my car keys, a bottle of water, and the Nintendo DS I've brought in with me...I tell her it's me and she nods. I explain I'm going to set my things down and come back, I kiss her hand and slip mine out of hers. Her blind eyes follow me the best they can across the room. I look over to her silently, taking a moment to take in the room and how it feels...how it smells. Her eyes are watery and full of fear, her brow is slightly knitted...she is scared and confused, and alone from what all her senses tell her. I realize she can't call for help, she has no voice...it is blocked by a thick plastic tube that is "helping her breathe", her hands are in restraints...tied down next to her sides. She can't speak, she can't gesture, she's blind, and only semi-conscious while being given amnesiacs so she can't remember one day to the next.

Terrifying

I walked back to her and held her hand, it feels like holding a surgical glove that's been filled to some comical size with warm water. I leaned close, so the light was on my face and she had some chance of being able to see me if I held still and told her all about family and friends, everything I could come up with. I felt so helpless, she kept looking at me with those watery frightened eyes. Finally I asked her if something was wrong...feeling the internal face-palm as I said it...of COURSE there's something wrong, look at her. She nodded and I started guessing. Sometimes she seemed to just drift off, her eyes going vacant and I'd try harder to guess the right thing. What did she need?...Pain medicine? Is your mouth dry? Do you want to talk about someone particular? Do you want the TV on? Are you feet cold? Do you want me to rub your legs? Are you uncomfortable? Is it too warm in here for you? Too cold? ...sometimes she'd shake her head 'no', but most of the time she'd just check out.

I put my head down on the hard plastic rail and apologized for not being able to guess right. I looked at her and felt struck with sudden inspiration...I started going slowly over each letter of the alphabet asking her if what she wanted started with it. Eventually, after about the fourth go through all 26 letters she nodded when I said 'M'. Later we narrowed it down to something starting with M that is a thing which is found indoors and does not have to do with the hospital.

It's still bugging me.

Doctors came and went, poking, proding...she'd cling to my hand and I'd try with everything I had to translate for her. "That hurts...no a bit more to the left...yes, right there" as her face would screw up in obvious pain. More x-rays, more tests...I'm almost sorry I said anything....they weren't watching her face, they'd never have known.

She got her glasses back today, they help what little vision she has left and I think it makes her feel a bit more normal. I can't imagine what it must be like, laying there like that, tubes in literally every orifice and several new holes made in your body to accommodate more tubes...I pray I never know.

She was also given a stuffed dog today, that came with a gentle story and the innocent, uncomplicated, unconditional love of three children. When I put it in her hand so she could feel the remarkably soft plush fur she closed her eyes, I told her the story and gently brushed the tears from her cheek.

When I left she was sound asleep, one hand tightly curled around the dog with her glasses on.

Wax on...Wax off

I spent this morning standing next to her as her vital signs went all over the map. It was a stomach wrenching roller coaster of a ride. Once she was mostly stable the nurse left as she was covering for another nurse who was going to lunch and the family in "bed 5" needed more attention than we did.

I stood there in the semi-silence of her room, the receptacle that collects the blood from the chest tubes bubbled away like one of those pseudo-zen waterfalls people put on their desks...there was the constant rhythm of cccshhhhh, click, puh-shhh as the respirator forced air in and out of her lungs.

The room is 3 normal walls and one made of huge sheets of glass that swing open in various stages from the size of a doorway to completely open. Inside the glass wall there is a length of hanging cloth that acts as a privacy divider. This was pulled a bit over half-way closed giving the room a sense of quite and privacy it hadn't had before.

I held her hand and put my other hand on her forehead and closed my eyes. "Heal" I thought over and over and over again as I took long deep breaths trying to focus on her with everything I have...I prayed silently "God, be with me, let the energy of the Universe...of all those praying for her, let her feel it" I took another long deep breath and focused, my hand moving over the incisions on her chest and as I exhaled I focused "Heal".

It's so hard to do, my mind keeps popping up saying I'm not doing anything or I'm being foolish or what an idiot I'll look like if someone walks in...and then, somewhere, deep inside of me there was this deep sense of calm and I heard "have faith" and I did...and I focused...but somewhere in the back of my mind I prayed for a sign it was working, something to hush the skeptic of my mind. And even in doing that I felt bad, because one isn't meant to ask for a sign when God simply asks you to have faith.

I felt so young, naked, pure...and I breathed and focused..."Heal" I could see her lungs in my mind's eye...but not in the medical way I'm used to picturing them. Just this sense of pushing that energy into that space and knowing where it was needed. I focused and breathed and pushed and relaxed into it, blending with her...with something beyond that room.

Finally I was exhausted, though it was more of a sense of being done for now and being allowed to feel spent. I slowly opened my eyes...her blood pressure was stable...her o2 absorption the highest it has been in days. I watched the stats in silence, some part of me knowing it was over and that nagging annoying bit of my mind waiting for the numbers to plummet again.

I watched for close to half an hour, I know because the blood pressure cuff went off twice and it's set to every 15 minutes. I looked at the clock as her vital signs looked better and better to me, it had been well over an hour. Suddenly I became aware of my feet hurting and the horrible crick in my low back from having been hunched over.

I hobbled over to the only chair in the room and sat in silence for a long time, just watching her and feeling deeply grateful. "Thank you, God" I said to myself over and over and over again.

When we went back a few hours later, she was awake. Her vitals have been stable, she squeezed my hand and all I could think was "thank you, God" over and over and over again.

Breathing

Tubes...lots and lots of tubes

Tubes pushing things in, dripping, monitoring...and more tubes, draining or carrying away what the body doesn't need.

More specialized care...specialized doctors and nurses.

We didn't have a choice, not really. If we didn't go this way the other way was a long slow certain death with a lot of pain...this was the choice with a light at the end of the tunnel that didn't mean ascension of one sort or another.

She told me yesterday, after the surgery, when she was cold...when she was uncomfortable...when she was scared. It's hard to believe, I guess, since she's been kept under generalized anesthesia, but I can hear her...or maybe it's better to say I can feel her. Or I could. Today we have a new doctor on the case, someone we trust and respect a great deal more than anyone else they've put forward. He caught something that has slipped through the cracks...she was silently going through withdrawal. Years of being on morphine were silently catching up with her and the sedation was keeping the physical signs from coming through. He looked at her pupils...there were pin-points and completely nonreactive. He climbed all over the nurse...I have to admit it felt good to stand there behind this powerful gray-haired man as he defended her and took care of her and people had to listen.

I'm tired in some deep and fundamental way. I feel sort of hollow...it's hard to explain.

I can't express how grateful I am for my family, for the well wishers all over the world, and for the care she is receiving.

I miss her, I have a knot I can't seem to untie in the pit of my stomach...all I know is something is deeply not right and I can't juggle things enough to be able to get enough time to fix it.

ICU

It's quiet, but not in the same way the other room was. It's in the way everyone moves and the hushed voices one instinctively uses in someone's sick room. Even the alarms are unobtrusive...a polite beeep beeep beeep in almost a melodic tone. Lights flash from time to time on the monitor behind her bed silently triggering a quiet visit from the nurse.

They forget she's blind. They'll enter silently and give a familiar, warm, reassuring smile before half stepping behind the IV pumps to press the control pad on the wall. I watch them, watch as they flip through menu options on the monitor from across the small room...usually they trigger the blood pressure cuff, though sometimes they click "print" and, giving that same smile, slip out of the room. Most of the time she'll ask me, "was someone just in here, honey?" and I tell her everything I just watched. She's grateful for my eyes and for someone letting her know what's going on with her own care.

I miss her when she fades and it scares me when she stops making sense. When I'm not there I can't walk away from my cell phone and I keep my car keys close at hand. I am in a perpetual state of READY. The hard part is not knowing what I'm ready for.

I tell people "she's a tough old bird" with a confident half chuckle and brings a polite smile and agreement from those that have been working with her, or a look of having been reassured by those new to her case. She is, too, she's a tough old bird. Still, somehow, this time is different...I wish I could lay a finger on how it is, but I haven't been able to so far.

Surgery in a few more days, unless her heart "forces their hand". Until then I'll keep up my love-hate relationship with visiting hours and maybe buy stock in Starbucks since I seem to be more living on their products than sleep or even air at this point.

Thank God for family, for being able to switch off so I can wolf down the lunch that's been brought to the ICU waiting room for me and get a chance to write for a minute so it's not all in my head and heart.

and lines

I watch, not exactly helpless…not exactly heartless, from my perch on the end of her bed as once again she struggles for breath in her sleep. I know it will come, like I know the nurses would if I call them.

The air is dry and cold, my lips are starting to chap, but it has to be this way…bacteria love moist and warm and this, of all places, is a breeding ground a sewage pit would be hard pressed to beat out. It’s quiet aside from her occasional nonsensical murmurings. I keep an ear toward the door; I am aware of every footstep that passes and tense every time someone pauses on the other side.

I wonder how many times she has sat at the end of my bed and watched me sleep over the course of my life. I wonder if someone will watch me sleep when I’m old and sick. I don’t want to be alone. I don’t want her to leave me, either.

She struggles for breath again, and my eyes go automatically to the monitor. I’ve learned a lot, I can read all the blips, numbers, lines, and graphs. Her hand moves to her chest as I watch her pulse rate drop into the 50s. Her 02 absorption is in the high 90’s, the blood pressure cuff triggers and I wait for the numbers…they are too high. There is a beep as her pulse drops below 50 and she begins to twitch in her sleep as muscle spasms control her limbs.

I take her hand, breathing deeply, focusing on her…she breaths a long deep breath, her eyes open a moment and I smile for her, even though I know she can no longer see me. She smiles in return…she doesn’t have to be able to see me, she knows. Her body relaxes as her pulse moves back into the mid 60s. The blood pressure cuff goes off again and I watch in silence for the results as she fades back into sleep.

When she wakes up I’ll smile and get her water, as I’ve done my whole life. Only now I’ll hold the glass so a random tremor doesn’t spill it, and I’ll direct the straw into her mouth. We’ll talk for a while about the past and gossip about family and I’ll hold her hand or rub her foot so she knows I’m paying attention. At some point she’ll fade away mid-sentence and I’ll watch the monitor until she wakes again or the pain comes.

We’ve been down this road many times, she likes hospitals and medicine…she likes being the center of attention and good drugs, she always has. Somehow, though, this time is different. The decisions I’m making for her have more weight and tomorrow I’ll make the hardest one I’ve had to…I can only pray it’s the right one and I have no way of knowing until it’s done.

So, for now I’ll hold her hand while she sleeps and watch the monitors and listen just incase a doctor comes by…and pray.