Wednesday, February 4, 2009
It's been over a week since Buffy has returned home. She is improving every day, but still tires easily. She still having problems with her vision at times and this is a source of frustration to her. Most of her motor skills have came back, but she is still having problems writing. But hopefully this too will pass.
Shes sleeping a lot and has problems with typing and finding her words quickly. She got some terrible news from one of her news groups this week and that shook her up pretty bad.
Over the weekend we finally got all the knots out of her hair. Poor thing, the back of her head was pretty matted up, but we got it out with out any major damage to her locks. This weekend we're going to maybe go and get her hair cut. Maybe.
Home life has found a rhythm that isnt too distant from “normality” as we know it. I get to work 30 min late every day now from taking the kids to school but other than me cooking most of the dinner meals, it getting to be business as usual.
Some of the bills are starting to roll in and I've been pulling in favors all over the place to try and keep us above water. We haven't got to the borrowing stage yet and by the grace of God maybe we wont have to. My Mom and Dad said they'd help out and I've got a few other strings to pull on, but we'll just wait and see. We have some interviews with individuals from different agency's coming up and we hope to qualify for some kind of assistance from one of the many programs out there.
The Health Department sent someone over this last week to ask Buffy a bunch of questions about where she'd been and what she'd been doing prior to getting sick. The lady left a pile of reading material for us to ponder, but nothing we hadn't already read on Wikipedia. That was weird.
Sunday, January 25, 2009
I took the most beautiful drive today along the Truxton extension heading West past Truxton lake. The setting sun warming the clouds with yellows and orange, Colin Hay softly singing over the car stereo. My wifes hand in mine as we worked our way across town going home. This long journey was coming full circle and we would soon be back to where we started, home.
So many things have changed over the last 2 weeks and yet we simple humans strive for everything to be back to our version of normality. Moms home. Shes in bed, shes on the couch, shes at the computer, shes hobbling with the walker to the kitchen. Shes laying next to me in the bed giving me warmth and taking it when needed. Shes breathing, snoring, talking, laughing, crying, whispering... It's like waking up from a bad dream to find that everything is ok and nothing happened. But then you see the pill bottles, the glucose monitor, her walker, and you know it hasn't all been a dream.
Her recovery is going well and she is getting around pretty good. Her appetite is starting to pick up and shes sleeping comfortably in our bed. She doesn't remember much, she dreamed that we went to Japan and the ICU room was her nightmare that she couldn't escape. I will let her tell you in her own words the vividness of the trip her mind took her on while she was asleep.
So far, so close, so frail, so strong, so fortunate, so humble, so happy. Happy. Normality.
Tuesday, January 20, 2009
YEA! They took the intubation tube out on Monday around noon! And Buffy thought that was it, she was going home. She swore that they said she could go home after they took out her tube, and boy was she mad when she found out she was staying for a few more days. The physical therapist came in and we sat her up after some simple exercises. And she promptly started to topple over. “Whoa. I'm dizzy.” Yea, its gonna take some time to get your strength back. “See” I said. You need a few more days before we can go home.
So today we did some of the things Ken, the PT guy, wanted us to do. She stayed sitting up on her own (after help to get there) but was still a little dizzy. She also expressed a craving for, of all things, strawberry fanta and chicken wings. We've been married 17 years and I have NEVER seen her drink a fanta, but this is what she is craving... So they fed her some bland chicken and rice instead. Yea, she didnt care for that...
She wants out so bad. She is dying to go to the bathroom by herself and I cant imagine that they'll be able to hold on to her much longer, maybe by the end of the week she'll get to come home. They tried to get her into a regular room today, but all the floors are full. So she is still in ICU, yammering away at the ICU nurses that are unaccustomed to having a patient that is eating and talking in the ward. They take turns coming by to visit her, finding the enigma of a talking, hungry, recovering patient too much to resist.
I'm starting back to work on Wednesday and for those of you wanting to send her stuff, I think this will be the best place for it to go to make sure she gets it. Please dont send flowers. They are a logistical nightmare, and the rooms have very little room for them. Cards, letters and small gifts are perfect. And she can take them home with her when she gets out!
Send them to:
C/O Wish I Had That.com
2841 Unicorn Rd. Suite 101
Bakersfield, CA 93308
We even have a loading dock in the back with a bunch of forklifts for those of you that want to send anything HUGE:) UPS, FedEx, and USPS are regulars at our place so I know it'll get here and to her.
Will post more on Thursday.
And if I havent been clear;
I want to personally thank everyone of her friends and mine that have lent their support to us in this desperate time. It has been a huge boost to me and I've been telling her every day all the things peps are posting. It made the difference.
Sunday, January 18, 2009
As you can tell if you've read the post below that my one and only got very sick. Deaths door sick with a high probability of brain damage. The very thing that destroys you in moments causing you to quickly rearrange life and prioritize whats important. The doom and gloom of this week has shifted me into a funk without an escape hatch.
Today I found the “Break Glass In Case Of Emergency” hammer in my wife. Rediscovering all the things that makes me love her so has been a time machine of emotions, jaded with age and dare I say knowledge. We invented a sort of sign language, since she cant talk, and spent the day communicating. Not the “talking” that people mostly do, but inventing a bond that no one else understands by simply watching closely and paying attention.
The tube should come out tomorrow (Monday) and she'll be moved into a regular floor room and out of ICU. A bunch of the ER and ICU people that worked on and cared for her over the last 9 days came by today to she how she was doing. I began to grasp how dismal her outlook was.
I want to get right past this last week and jump and sing about how great shes doing, and truly my heart strings were strummed a few times today. Esp when the doctor came in and she, with no words, made it perfectly clear to him that she wanted the tube out. I beamed like a father whos newborn took his first step, said his first word, scored the winning goal and graduated college all in one moment. I musta been acting like a geek. Oh well.
I looked outside the hospital today. I swear that it has been picked up and moved 3 feet closer to the East. Moved on the shoulders of Buffy's family and friends world wide. Why East? Closer to the rising sun that is my wife. You guys rock!
Up next. The road to recovery. I'll keep posting as this week starts off. I've got to go back to work on Tuesday, so things are gonna get weird fast. Cant wait to see how this goes.
Prayer. It does a family good.
And I believed that for awhile now. All the work the groundskeepers do to the outside of the hospital to make it look nice. The architecture that conveys peace and serenity. The elderly volunteers that greet you with warm smiles and ask if you need help. The housekeepers that ask how you are and tell you they will pray for you and your family. All these things only hide tragedy behind huge mag locked wooden and steel doors. Frosted glass that keeps prying eyes from witnessing the uneasy sorrow of sick and dying people. The family's that stand in the halls whispering quiet words and sharing muted hugs. Dads, Mothers, Sons and Daughters sobbing into the shoulder of loved ones...
You spend enuf time at a hospital and you'll see that these things happen everyday, every minute, and every moment. I've been part of those groups of people wanting to be somewhere secluded and sheltered from the brutal reality of what their lives now bare burden to. And the clock hand will tick on, thundering out another moment in time lost. Life lost.
From the day we are born we start to die. A bazaar mixture of genetics, fate, dumb luck, faith and self worth will determine when is our time to go. And go we will, with out choice for most of us, and with choice for some of us.
The time between those two moments is the only time we'll have to express ourselves. To make clear to others what we hold dear and close to our hearts. Do not think for a second that you have tomorrow, for frail are we. And the souls that inhabit this world around us can be snuffed out in an instant. Make use of that time. Tell the ones you love that you love them, you may not get a second chance.
By the grace of God I did get a second chance. Buffy is still intubated but they think they will remove the tube tomorrow (Sunday). She been very awake and breathing on her own for over a day now. She can answer yes and no questions with head nods, and tell you volumes of words with her expressive eyes. She dose not like trick questions. She can move all of her limbs and is trying to scoot around the bed to get more comfortable. She even managed a laugh all tho it looked very painful with the tube down her throat.
The nurses hung the pictures on the arm of the ventilator right by her head. And every time I went in there today she was wide awake staring at them. She knows shes in the hospital but doesn't know/remember why. I asked her some pretty odd questions to see what she remembers/knows and she answered all of them correctly with no problem.
“Do you know what deviantart is?” Head nod yes.
“Is you birthday on the 16th?” Head nod yes.
“Do you know who I am?” Head nod yes.
“Is my name Fred?” Frowny face head shake no.
“Do you know yesterday was your birthday?” Frowny face that turned to crying... Hugs and kisses made that one better. The I told her that her bracelet said she was still 39 and she wont turn 40 till shes home with us. A painful laugh.
All day long we talked like this. My heart beaming and lifted to heaven with her getting better. But as I left her tonight to get some rest for us both, I reflected on the silent tragedy's all around us there. And the way I felt a sennight ago.
I believe that a miracle has been preformed behind these walls and by Gods grace Buffy will keep getting better. But a life lesson has been learned by me and mine that will forever be with us.
That clock hand will move and never return to that moment. It is gone forever. Make use of those moments, you never know how many you have left.
Friday, January 16, 2009
Still no idea what has my baby in its grips. Not that they aren't trying. 7 vials Wednesday and 4 more on Thursday and 3 more today, Friday. They are leaning towards liegonellosis
The pneumonia is starting to break up and they have backed off the ventilator and set it to an assisted breathing mode. Shes keeping her eyes open for longer periods of time and can track movement. When the doctors and nurses asked her to squeeze their hand and she couldn't, she started to pouty face cry. I feel so bad fer her because I know she cant understand why she cant make her body do what she wants...
You can see the fear in her eyes when she opens them. She doesn't understand all the things happening to her and it scares her so. I want to be there 24/7 and it tears my soul when I have to leave. I want to crawl in that hospital bed and hold her and tell her everything is going to be ok, but they wont let me...
Today was her birthday, but we're putting off celebrating till shes home. My mom and kids made a board with pictures of us from Christmas on it. Her eyes got wide open and tracked around the board when we showed it to her. I cried.
The kids went in to see her and talk to her. She can move her head from side to side trying to find the source of the voice, but even these small things wear her out and she drifts off to sleep. She has a very infectious yawn that she has been showing everyone. A testament to how worn out she is from fighting this bug.
I also started reading the most bazaar choice of book to her. She has always wanted to read Fear and Loathing by HST but has never found the time to read one of the copies floating around the house, so I read her the first 5 chapters today. I hope this isnt a step backwards for her. Its a weird counter point to the bible that shes been hearing most of the time. They say she need mental exercise and I think that the swing of reading material is going to give her brain a workout.
They say if she wakes up a little more that they can take out the intubation tube. I know she hates this thing. Her tongue is doing double duty to try and get it out. They had to put a little plastic collar around it to keep her from crewing it in two. I will hear about that tube for the rest of my life, but I will gladly take whatever punishment she deems necessary for letting her be intubated.
Some good and not so good news from her doctor today. When she came in on Friday they told me that they gave her a 10% chance to make it. Oh man... She was below 6% in her lung capacity and the respiratory therapist told me he hadn't seen anyone that bad bounce back like she has in the 20 years he'd been doing this. BTW his name is Randy, and he was AWESOME!!! All of the staff at the hospital have taken such good care of my baby.
So I came home to recharge my life battery. Shes going to be a hand full over the next few days. We are just praying that she gets back full use of her grey matter and doesnt have any long term effects.
A note to those wanting to send money...
I cried at the thought of total strangers wanting to send my family anything. There are some very unselfish people out there in this world, and I think that God has a place for them. God knows your heart. But at this time I must graciously decline any offers of money. There are far more needy people in the world than us. I have a great extended family that will help us thru the times ahead.
Cards and flowers and such for Buffy...
You know. I never, NEVER knew how many people Buffy had touched on Deviantart. She has always been a kind soul and very supportive in everything, but she must have done something right over there. You guys have been amazing, and dont think I havent been telling her about all the posts and PMs that I've been getting. I'm going to print them all out so I can hang them in her room when she gets out of ICU. I dont know the names but she will. When she gets a room I'll get you guys an address to send stuff to. A few of you are chomping at the bit and that will go miles in her recovery.
Keep those prayers and good vibes coming. There is a miracle being done behind those walls.
Wednesday, January 14, 2009
I'm skipping Saturday and Sunday as they were spent fretting about my one and only's condition. She was sedated and on the ventilator laying on the active cooling bed as they still wrestled with her temperature...
Monday offered a little hope as they got her temps under control (kinda) and were able to start regulating them with medicine. They started taking her off the sedation to see how she would do, but kept her under for the MRI on Monday after noon. And Monday passed with pretty much the same wresting angst that Saturday and Sunday did.
Tuesday. They day that I forever will hate. The day that knocked me right back to Friday. The MRI results confirmed brain damage. Me and her mom were stunned, floored... destroyed. Oh dear lord... Not my baby, not no. We're going to grow old together. Not her....
So I spent Tuesday night with her, holder hand and kissing her forehead telling her that we love her and need her and want her back. How our lives cant go on with out her. All night. My love.
Early Wednesday morning (today) she seemed to be responding to stimulus and she even tried to open her eyes when we were changing her sheets. The doctor came in about 9am and asked the nurse for an up date. She had been off sedation since 3pm the day before. He seemed happy that she wasnt worse. He tickled her feet and her leg jumped a little, and then he went and poked at her chest. Her ams flailed and her head came up and she open her eyes!!!! OH GLORY!!!11!!!!
I ran to her side to look in her eyes. They were rolled back in her head but were coming down. She blinked a few times as I looked into her eyes and told her how much I love her and how much we all miss her and how we cant wait to get her home... Then she went back to sleep.
I felt good enuf (after calling everyone) to go to my parents house to grab some sleep. I turned day shift over to her mom, her cousin and my dad.
When I got back to the hospital at 4, the neurologist, CDC, and transmittable disease doctors had just left. CDC was pinging the TD doctor about what it is. He/They still dont know what strain they are dealing with. The neurologist had done some checking and seemed totally convinced that there was no permanent brain damage, and that her body was simply shut down to fight the infection. He was happy with her pain/reflex responses and her pupil dilation and reactions. They took 7 more vials of blood to run yet more test.
So me and her mom left on that high note to get some rest. I needed to get an update out to all of you guys too.
I want to thank all of you for the prayers and good vibes. All my buddies on the AAO Beta team, the great guys at SimHq, and all of Buffys great friends at deviantart. I think I pm'd 3 peps and made one post and theres 10+ pages worth the well wishes and prayers.
She need them and they are working. Keep it up so we can bring her back.
Monday, January 12, 2009
So I've been trying to take notes on the people that have been helping Buffy and things that have been happening. I started doing this Saturday morning because along this journey the have been some awesome people that have cared for my love.
Friday. They let me go back to see her around 8:30 I think, and that was hard. Her temp was high and heart was in the 160's The nurse in charge of her in the ER was Bob. Simply amazing. He took the time to answer my questions, he explained what all the machines were doing and let us know the she was now “His” patient. He told us what to expect in the short term and he let me and her mom love on her until we got to carried away. He'd make us back off and relax, because she need to rest. I told him he was the man in charge as far as I was concerned.
Tim, the respiratory therapist, told us what he was up to and also answered our dumb question we must have been asking...
Linda, Buffy's mom. If you pull out a modern dictionary and look up the word “rock”, you will find a picture of this woman there. Buffy's dad had just gotten out of the hospital on Wednesday. He had been in there since December 23 and now I call her telling her that her daughter is in the ER with possible brain damage. Oh man....
Friday finished with Buffy in the ICU unit at Mercy SW. They were wanting to move her to the downtown main hospital to do an MRI, but couldn't get a room till Saturday.
Sandy was Buffy's ICU nurse on Friday after noon. Another awesome person to meet along the way. We'd get to see her again on Monday. She reiterated many of the things the Bob had said about the wide spectrum of antibiotics they had started Buffy on. They didnt know what, so they were treating her for it all.
I sent my shell shocked kids home with their Grandma Linda. One of Buffy's cousins, Lori, had come down from Lodi to help take care of Buffy's dad. Seeing his grand kids would help lift his spirits and keep him occupied. He couldnt come down to Buffy because of his current condition, and it was driving him mad.
Lupe came in for Friday night to take care of my baby over night. He made me feel calm as he liked to keep everything nice and dark in the ICU room and “Let her get the rest she needs”. They had her on active cooling to arrest her temperature. Temps were down to the 103's and her HR was down in the 130's
I went home Friday night with my head swimming and my stomach full of bile. Still looking for the bottom of the pit that I had fell into. I randomly open and closed my eyes for the next few hours in a futile attempt to sleep. It never came....
Its Monday night, I need to go to sleep. She still in the hospital, sedated and on the respirator. They were going to try and wean her off the sedation starting tonight (again). We've got a long haul in front of us and I need rest. I'll try and catch up tomorrow.
Keep the prayers and good vibes coming. She needs them.