Today's a 'Bad Day'... Can't Stop Remembering 2008

Losing Wayne.... again

I find myself crying, sobbing, vocally mourning the loss of Wayne like I did the week of the stroke. I'm surprised by this, yet I'm finding it to "make sense". We are at another "fencepost" as a caregiver class referred to it; a transitioning spot where what was is no longer and the next stretch of fence looks very different from what's behind us. and it's unknown. I'm not bad with unknown (at least I don't think I am) but I am terrible with closing chapters--and I mean terrible--and with letting time pass to allow for healing (a.k.a. Patience).
Wayne needs daily, maybe hourly, care; so he will go to a skilled nursing facility. His apartment lease ended and I've been moving him out over the past week... It's another crazy "widow" type experience, going through all of your loved one's belongings and having memories flood your being without warning, and having to decide what to keep versus what to donate.  My body is manifesting the stress physically: I've been in cold-sweats for 8 days now, my oh-so-awesome facial numbness, and a rash taking over my right hand.
I miss you, Wayne!

 November 2nd would have been our 11 year wedding anniversary.

I am lonesome for him--it hasn't been the same since 2008 (obviously), but at least I had some bits of Wayne in my life. I'm at the point where I'm realizing I've been underwater for months, treading water, holding Morgan with one hand and Wayne with the other, kicking like mad to get all of us back up to the surface... but I can't.  The divorce and the loss of my job caused Wayne to be on state healthcare and benefits. And then the leg fracture requiring surgery and after-surgery PT (physical therapy) and nursing and pain management care--it was like a trifecta that demanded I take another path.
   I wish I could continue to muster the unhuman strength to get all three of us to the surface.
   I wish he could live up the street from us, take the bus down to our house and visit Morgan and/or Luna (our 2 year old Australian Cattle Dog), and spend Fridays with Morgan.
   I wish he could have freedom, independence, and a life.
I called Wayne two days ago, so Tuesday, and just sobbed on the phone. He did too. I said, "I'm so sorry that I can't come visit you at the hospital.  It brings back too many memories, and I really need to detach from being your primary caregiver. I hurt and hate that you are sitting in a hospital, and that you are probably sad, hurt, and lonely.... but I'm sad, hurt, and lonely. I wish you had chosen me.  I can't protect you from sadness, pain, or loneliness.  I can't protect you from anything I'm realizing. But I can protect myself. And it is so painful to not be there with you or for you!  I'm so sorry that this is what life handed us and it sucks.  I love you, and I'm not taking Morgan away from you, or abandoning you. We'll come visit you when you move to your new spot, once you are out of Harborview. Okay? Okay. Bye."
The best analogy I can identify is how it must feel when your loved one gives you the last seat in the life raft... how Rose must have felt in Titanic when Jack left her to survive. Why does it have to be a choice? Why can't we both survive? Why does one of us have to sink?
I suppose we both can survive, actually.  I just can't be the one helping Wayne to survive. He needs to help himself do that, and if he needs assistance in doing that, it can't be me to "save" him.

*Light bulb* (hahaha--like in Despicable Me. LOL)

Manifest-ering

On Saturday morning, as Morgan and I walked to the car after a sleepover at one of her friend's house, she mentioned Wayne for the first time in 12+ days. "I hope daddy is okay.... I wish I could see him--can I visit him at the hospital?" "Absolutely. Let's head there now. Okay?" "REALLY?!?! Oh thank you Mom! Thank you!" as she tilts her head to the left, places her prayer-shaped hands on her left cheek, and bats her eyelashes. (She is "Gone With The Wind" girly-dramatic--I can actually imagine her saying, "I do declare!")

Then, a few seconds later, "Mommyyyyy? I'm scared to see daddy," Morgan said timidly. So, we talked through it and what to expect and what our plan was and how long we would stay and what did she feel our purpose was in going there and what we are not going to do while there, talked about what she was scared of, talked about all of it during the 15 minute Express Lane drive south to Harborview.

As I turn onto 9th Ave, I can feel my lip go numb and my breathing get shallow and exaggerated... I hate seeing the Emergency Room entrance... it all rushes back:

racing from Northwest Hospital on 2008-April-02 to Harborview, not knowing where to go, not knowing if Wayne died in the ambulance during the emergent transfer, having to get into the parking garage and unload Morgan and the stroller and the diaper bag, unsurely approaching the Harborview West Entrance and if this is where we were supposed to be, seeing several people leaving Harborview carrying plastic, bright neon orange Harborview Discharge bags... "Please let Wayne get one of those bags someday," I say under my breath.  "I hope we get an orange bag..." I said to my mom walking beside me as I push the stroller through the automatic doors. The possibility that he may not leave the hospital at all but rather have one last transfer, to the morgue, was very real.

We easily find parking on a side street, and before we get out to visit Wayne, I turn to Morgan and calmly and matter-of-factly explain, "Because daddy almost died here [5 years ago], the sounds and smells and seeing certain things can be very stressful to me. It also brings back a lot of stressful memories. And when I am that stressed, I can have a difficult time breathing and staying calm.  So, I am going to have music playing in my left ear [through my hands free earpiece connected to the KindleFire] to keep my brain busy and to help keep me calm. I hope we can stay until you are ready to go, but I might need to leave if I get too stressed-out." She agrees to this plan.  I also acknowledge "if you get too stressed out or scared, we can leave at any time. Just tell me when you want to leave..."

Me as a 'Sister Wife'!

When all of us "stroke wives" were in the depths of grief, problem solving, mastering the juggling act of so many roles, I joked that what we each really needed was a "sister wife". I'm sure the idea came from my adoration, commitment, and obsession with HBO's "Big Love" series.

We each needed someone who loved our stroke-survivor husband as much as we did, was willing to stay "knee-deep" in the trenches of this post-stroke life, and be a support system, shoulder to cry on, and another adult brain in-the-room to help make decisions for us stroke-wives.

I received this mug in the mail today from one of my fellow stroke-wives... It's like a trophy or an award!

So... "I'd like to thank the academy".... of aphasia, apraxia, epilepsy, neurology, ... To all of 'the therapies'.... you know who you are ;-) ...

And to my stroke wife sisters... *tear* ... I don't know where I would be without you, both mentally and physically, if I had not had you to share AND CONTINUE TO SHARE this unique, forever altering journey.

LOVE YOU 'sisters'!

Broken

So many things seem broken.

So many things are broken.

I feel broken. My commitment to Wayne as a friend feels broken. My perseverance and steadfast dedication to facilitating, fostering, and feeding a relationship between Morgan and Wayne has been broken.  My willingness to include Wayne in future family activities, even if or when I have a new partner, has a fracture in it now that may never heal.

Seven days ago, none of this was true.

Six days ago, Wayne fell and hurt his right ankle, and it was not realized by me until I was dropping Morgan off at her dad's apartment on Friday afternoon for their weekly sleepover.
After Wayne didn't answer Morgan's repeated (and annoying) doorbell "alerts" and I finished sending the text message that I was typing, I used my key to open his apartment door only to see him struggling to stay upright, in severe pain, using a cane with his one working arm as a second point of contact with the floor as he wasn't able to put weight on his right foot. My high-functioning, wanna-be-ER-doc, skills kicked in. I rush to help him, and with his arm over my shoulder, we attempt to get him back to his bedroom, but he can't keep his right foot from hitting the floor, so I quickly squat down, wrap my arms around his waist, and lift him while walking him back into his bedroom.
I started having an anxiety attack and felt myself starting to dissociate. He was adamant that I should take him to the doctor, but I seriously could not take-in the millions of feelings, thoughts, reactions, concerns, flashbacks... the lower right quadrant of my lip and chin started to go numb, which is my body's (unfortunate) white flag. And then I notice Morgan quietly standing in the corner of his bedroom, tears in her eyes, lips quivering, but so desperately trying to not cry, show concern, or distract my attention from caring for Wayne which has been (unfortunately) the most emergent task over the past five years when he is in need of something. Both Morgan and I have been on the back burners for five-and-one-half years! Ugh! And not okay!
I pull Morgan towards me, calm her, get her settled-down as much as I can in a very short amount of time, because I now know that my body had already surrendered and I needed to get me out of there too. I set Morgan in front of the TV: our most frequent, reliable, and not-as-damaging-as-what's-happening-in-the-next-room babysitter over the past 5.5 years.
I close the bedroom door, and say, "If you can get yourself to the pub to land yourself in this condition, you can get yourself to the doctor.  I can't do this," as I begin to have another panic attack and can't catch my breath which scares me which makes it even worse... again: ugh.

I take Morgan home, talk over my thoughts and options with a kind friend, and decide to beat the stress out of my body by working out and running on my treadmill rather than what has become my "norm" when my body throws-up-its-hands (the norm: taking an excessively long, steaming hot shower while I lean against one of the walls, while the water pours over my back and neck, snuggling my arms in between me and the now warm shower wall, hugging myself, and just crying. Crying hard. Not always making sound, sometimes not able to take-in a breath because it seems that there is so much that needs to come out, but rather frequent drops of silent tears from a heart that aches).

I feel broken. I've started living, loving, and laughing again in a way that feels so normal and Julie-esque (sp?)... but there's an overwhelming pain that still exists in me, a trauma experienced which can never be forgotten, and triggers that cannot be prevented or predicted. And it all appears to be just below the surface. Tucked away just enough to fool you into thinking that you have moved beyond that pain, that you are "really doing well", that you can tackle a new "stressor" (be it a good or bad stressor, like Halloween & Trick-or-Treating, or Morgan's first Picture Day at School, the loss of a tooth & therefore coordinating with the Tooth Fairy), ...
I've dealt with all of this, while raising a fairly well-adjusted, bright, caring daughter, without a partner. My partner was the "affected" one. I haven't had anyone to come home to, to get a hug from, to talk through and process the day with, to laugh with and tease each other, to make small & seemingly meaningless decisions with, or huge, instrumental, high-impact decisions with. There's a loneliness that I'm unsure of how to "handle"...

I cleared my head on Friday by pounding out the stress, frustration, and angst in me on the treadmill and expelled the anxiety, stress, and fear from my body, like the toxins they are, through sweat!

So, I cared for him over the weekend: iced his ankle, tended to the multiple wounds on his right limbs, ACE bandaged his ankle... on Monday, it was much worse. My body went into full-on denial mode and was waving all of the white cloth items it could find. I pushed through and took him to an urgent care and they X-Rayed his leg and it turned out to be broken. I couldn't catch my breath the entire time he was in the clinic, so the doctor called me and told me that it was fractured, not just sprained like we thought, and she will send him via ambulance to a hospital. I, of course, chose Harborview, and he was prepped for surgery upon arrival.

The idea of what our life could look like continues to shift, shatter, morph, melt, settle, but right now it feels broken.

Recognizing the Depth

January 10^th, 2013 was an eventful day to say the least. It’s been difficult to get Morgan off to preschool—I work from home now and I have conference calls that start before I can get M to school, but then I also have a very small window to get her to school. And, quite frankly, all excuses aside… I don’t have the energy, the steadfastness to fight the uphill battle everyday. No matter how much it would be easier for all of us…. It. Just. Is. Not. Possible. Can’t do it.

I can’t get her dressed while she begs and cries to not go to school. I can’t get her to eat, I can’t get her in the car, I can’t get her into the preschool building and dropped off. Now, I can’t. Not “I can’t get her to do what I’m saying”. If I had time, patience, some tiny morsel of stamina and “bandwidth” left, I could…. But I don’t, so I can’t.

I probably could if I wasn’t working and had all day to recuperate and then get ready for her energy level to come home and do the evening routine.

We are barely skimming by. On every front. Barely getting enough hours in at works. Barely getting food into our systems. Barely getting sleep. Barely getting Morgan into a routine (morning, day, or night-time). Barely able to pay rent. Barely able to fit into my clothes I’ve gained so much weight these past 5 years. Barely able to imagine what 2013 will hold.

My cell phone rings mid-morning and a girlfriend that I really admire and love, and had secretly hoped to be closer to her and a friend she would “select” to confide in. Well, it was her on the other end and she was asking Morgan to be her flower-girl in her wedding this summer—August 2013. Yay—how absolutely exciting!!! Morgan instantly went and packed her Strawberry Shortcake rolling suitcase and set it by the front door. “When do we leave?!?!”

Then, my friend Beth asked me to be a bridesmaid in her wedding… wow. The depth of connection I felt was amazing. The depth of appreciation I felt was great. The depth of being honored by a woman I hold in high esteem was filling.
This is the little “push” towards normalcy that I’ve been seeking. How do I start getting out, into the world, into friendships, and living life? This wedding was gonna be it. I am elated!
I took a break to eat lunch, and Wayne came into the bedroom where I was sitting on the edge of the bed, watching tellie, and eating lunch. He stood there, dazed and eyes glazed-over, left hand on his left hip, shaking his head, and lost in thought while looking out our bedroom window at Puget Sound.
“You look concerned?”

“Yeah!”

“Do you wonder if we’ll get back to New Zealand this year for vacation?”

“Nah. Whee,” while shaking his head and waving his hand to indicate ‘No’ like he was sweeping crumbs off a tabletop.

“It seems like it’s something in the future. ?? Yes??”

“Wheee! Yeah. No, no, no.” (which translates to, “Yes! Totally—you got it. Something in the future!”

This went on for 20 minutes. Back and forth. Yes-No questions from me. And random words with clear inflection and excitement or disappointment in his voice when I got it right, or got it wrong.

Finally, I hone-in-on the fact that he is talking about his and my future. And then I pause… I freeze. “Do you want a divorce?!?”

And, Wayne, still zoned, calm, and matter-of-factly, didn’t show excitement or like he usually does when I finally get the point, “Fuckin’ finally”… he just nodded his head, and said, “Yeah. …. Yep.” And then he broke the unbodied gaze and looked at me with defeat.

I felt the same. Defeat.

The depth of defeat I felt was suffocating. I felt the depth of this realization for him, and to make this decision for our family, was startling. Deep. Deep, deep, deep under heavy boulders. Deep, deep despair. Deep fear and anger and loneliness.

I believe he saw Beth’s invitation as a sign that people move on and get re-married. That happiness is still an option. That the road on which one is traveling is not necessarily the best road.

Five days later, on January 15^th, I had a long dream. A dream from which I awoke crying. Sobbing. It was a dream of Wayne and I, sitting at the plastic white table down on the Seattle waterfront where we sat on our first date. He looked like the 1999 version of himself—more of a mullet-style hairdo, less of the post-hypothyroid-bulging eyes, no dent on his forehead from the craniotomy, and words. Words that I long for him to say and for me to hear.

“I’m calling it,” he says in my dream. “What?! You can’t just call it. We are in this together!” “Well, I’m calling it.” “You can’t just make that decision for the both of us. I’m here—I love you. We aren’t calling it quits!” “Well, I am.” I couldn’t believe it. How could this deep love of our lifetimes just be done? How could he be just putting a “lid” on this deep life that had intertwined and evolved?

“I’m not leaving you!” I scoulded. He said, “I know. I’m leaving you. I’m holding you and Morgan back. I’m not moving forward, Julie. I’m stagnant. And you and Morgan aren’t moving forward. You’re stuck. You need to move forward.  And you have to do it without me.”

“I don’t WANT to do it without you!”

“You’re gonna have to.”

“You do not get to make this decision for all of us!”

“I am, and I did.”

“So… you still love me then?!? I thought you asked for the divorce because you didn’t love me anymore with how much I’ve changed since the stroke….”

And he just smiled his Wayne Bacon smirk and did his fake-wink at me (where he acts like he is winking his right eye, but he turns his head to the left while tipping it toward me so that I can’t see his left eye and it looks like only his right eye is closing… but, he can’t wink… so he’s blinking, but hiding the left eye from me).

He does love me—okay. Well, now I’m not as confused, because I just couldn’t understand how much we could love each other and then have it just all be gone. Poof. Vanished. Shallow. Nothing.

I woke up, to January 16^th, 2013, and I was bawling. He woke him up, and I told him my dream, and asked him if he still loved me but just realized how “we” no longer worked… and he started to cry.

I felt the depth again. It was no longer where I would reside and live and love and laugh… but the depth was back.

Bacons are Home & Doing Well, but I'm having an adrenaline crash

I went into Harborview and was told straight away that they were anticipating discharging him this afternoon. I started crying to the neurosurgeon and physical therapist--I'm not ready to care for him like this!! Since I wasn't really there on Sat. or Sun., I didn't think he had made all that many gains or recovered his lost abilities. I met with "all of the therapies" (PT, OT, SP); I really challenged PT to ensure he was really able to get in and out of bed on his own, get up and down from a seated-position on his own, and know what stretches he needs to do on his own (not me doing it with him).

I was surprised at how much he was able to do again, compared to Wednesday when I called 911. And how much the swelling had gone down!  Wow!  Okay, so he just may be ready to come home today.

"But how do I know he's safe to cook? Or that it's safe to leave our 4-year-old daughter with him? He's caring for her this summer since she's out of preschool for July and August." I told them about the November 2008 car accident he was in and how afterward he had new deficits (i.e., dressing apraxia, opening vs. closing doors when leaving the house). How were we sure he didn't have some more detrimental apraxias?!?  They didn't know that these were concerns of mine and stated that they'd have OT come and assess him again, since she assessed him when I wasn't there, and that SP would come talk to me about comprehension and cognitive function.

After PT's evaluation, I sat and quizzed him to see if his comprehension was back up to where it was pre-surgery. I noticed his eyes were lit-up again; the light behind his eyes seemed to be turned on and he didn't seem to be in a fog anymore. He was able to do our standard thumbs-up for "Yes" and thumbs-down for "No" that he was not able to do at all when I called 911. Then I tested him with basic questions: "we have a son", "Is it December right now?", "This is my knee" as I pointed to my ear. Before today, he would've looked at me like, "Oh! You want me to copy you" and he would've grabbed his ear and tugged on it while he looked at me like, "Yeah you idiot, that's an ear! I'll grab mine and you'll see... I totally understand what you're talking about!" He would've missed the whole intent of the question and the action.  Now he's understanding that what I was doing was quizzing him and he also understood what was required of him.  Whereas 3 or 4 days before today, he would have missed the boat, so to speak, in terms of what was my intent in grabbing my ear and looking at him with a questioning face and a high pitched tone.

After a bit more "talking" back and forth about Morgan, and if he thinks he's safe to care for her, I went and told the staff that I was okay for him to be discharged to our house instead of a nursing home or skilled nursing facility.  I was definitely reassured after our "conversation"; he was able to assess his abilities, his deficits since the surgery and how they would limit him.  Here was our conversation: "Do you think you could walk Morgan up to the park by yourself again?" "Ummmm, no." "If I drove you two up there, would you be okay hanging with her for an hour or two?"  "Yep, whee, whee." (translation: "Yep, totally. Yep, I could do that!").

Rest Up

My dad, Morgan, and I went by on Saturday for an hour to say "hi". At first Morgan didn't want to get out of the car--"I don't want to see Wayne" she'd whine, over and over again. Then, when I enticed her with a walk with just her and me and that she didn't have to go into his room, she agreed to unbuckle and get out of the car. As we were walking into Harborview, Morgan was skipping and saying, "Which way to Wayne's room? I can't wait to see daddy." And then, she laid on his bed with him, watched Scooby-Doo, and we couldn't get her to leave him. She wanted to just stay with him and told me that I could come back later and get her.

None of us visited today. My dad and I got a lot done around the house, but it also just felt good to not have to be in-charge or care for Wayne for one day since he'd be back on my plate in a day or two. The doctor and therapists estimated that Wayne would be discharged to my care tomorrow. I called Wayne and talked to him on his hospital room's phone--I told him I just needed a day of being home, and that I thought he could just relax and sleep and heal as much as he could before coming home to a 4-year-old daughter.

Tight Hamstrings are the Culprit

PT came and assessed why Wayne couldn't sit-up on his own, had trouble walking, and what his grimaces and flinches were due to: extremely tight hamstrings. He can't even extend his legs all the way--not even halfway. He was given stretches to do. At least he doesn't have nerve problems, a herniated disc, or motor control issues due to additional brain damage.

The neurosurgeon came by around 5:00 PM again today and stated that they were going to just keep him over the weekend, have the staff walk him around a few times a day, have PT see him if possible since therapists are scarce on the weekends, and then see how Wayne is doing on Monday.

So, we're in a sort of wait-and-hold pattern...  *sigh*.

Chop And Change

chop and change (British & Australian)

to keep changing what you do or what you plan to do, often in a way that is confusing and annoying for other people [per http://idioms.thefreedictionary.com/chop+and+change]

Let's just get one thing straight--I'm not the one changing the plan, I'm the annoyed one.

A very senior neurosurgeon came into Wayne's room around 4:45 pm and showed us the CT images (see one below) from last night's ED visit. He pointed out how the fluid is collecting and pushing in on the brain and out on his scalp. He stated that he doesn't care where the surgical team puts the shunt (i.e., ventricle, outside of the skull, in the midst of the left hemisphere), but he knows it's what needs to be done--there's really no option.  The shunt would be a tube that is placed under the brain, up into his left ventricle, down through the base of the skull, curving around to the clavicle/collar bone, then coming up to a subcutaneous level (so just beneath the skin), down across his chest and ribs, and into his stomach.

After that doctor left our room, Wayne looked extremely dismayed, saddened, teary-eyed, and defeated. I "listened" and rubbed his arm and just kept telling him it would be okay, it's standard procedure, and... there's no choice right now--just like when we had to remove half of his skull on Apr. 2, 2008 to save his life... this has to be done and we'll do our best with whatever comes and results.

Then, Wayne's doctor, the one who has performed all three of Wayne's cranial surgeries, came to the bedside around 5:30. He is matter-of-fact & to-the-point, but will not downplay our concerns, kind of guy.  He incorporates our comments & concerns & suggestions, he really listens, he states that I, Julie Bacon, know Wayne better than any of the health care providers and that he has to trust me to indicate when Wayne's neurological state has changed, & he asks 3 times if we have more questions.  Great doctor!
This surgeon outlined a totally different plan...

I have some great news (but please keep the above phrase & description in mind while absorbing the now-current plan for Wayne):

    Wayne's neurosurgeon decided around 5:30pm that he'd really like to observe Wayne for another day and the bulbous pocket of spinal fluid hanging out on his left temple and corner of his forehead.  The doctor stated that he believes that if we keep Wayne inclined in his hospital bed, and he gets up and starts moving around and walking, the fluid will drain on its own.
Whaaaa?!?!?! So no Shunt...???
"No, that would be our last choice."
"Then why have we been waiting all day for the OR to call, and Wayne hasn't been able to eat all day?"
"I put the shunt on the table so all the staff and you guys were ready for it. But observing him over the last 24 hours and assessing it with the team, we believe his body could take care of this.  And we want to give it a chance to do that. We'll give it another 24 hours, he can't recline less than 30 degrees, we'll get him up and walking, I'll order the therapies (OT, PT, and SPEECH) to come and evaluate him tomorrow.  I'm not sure what's going on with all the difficulty with his leg and core muscles. But, we need to figure that out."
"Wow--okay.  We are definitely fine with waiting to put in a shunt!!"
Wayne instantly perked up, inclined his bed, and his spirit was lighter, ready for the challenge of doing this on his own versus an "implant".

We may still need to do the shunt, but for now, Wayne's in control of his body again... which is what any 41 year old strong-willed man would want.

He still has some additional deficits since the surgery.  His comprehension has declined. His physical ability to sit-up, stand-up, and walk on his own has diminished--he had major surgery, but it's not just slightly worse, it's definitely declined. His limb apraxia is much worse.  His ability to communicate is worse. He even used his eating utensils incorrectly--he was using the soup spoon to try and pierce and grab his entire pork chop. I said, "Try using the FORK." This does several things--it tests his listening/comprehension, it tests his ability to change what he's already planned his body to do, it tests his ability to look at the utensils and pick which one is a fork. I became very saddened by him using his soup spoon because this is what he did frequently back in May 2008.  "Really?!? I'm back to teaching him toddler things again?!?! We're back to one month post-stroke! For the love of.... (*deep breath*)... Okay, well--we taught him all this before, we can do it again."
He picked the fork out of the four eating utensils in front of him, and he used it correctly! When he'd cut and eaten about half of the pork chop on his own, I used the knife to cut up the remainder of the pork chop into four pieces.  Not even thinking about it, I laid the knife across the back of the plate.  He picked it up and was trying to scoop the pork chop pieces onto the blade and get it to his mouth. CRAP--this really is happening!  So, I demonstrated how all of the utensils looked when I tried to "stab" the meat with them... the soup spoon, the teaspoon, the knife, and the fork... "Which one works best?" He chose the fork. Thank forken goodness!

So this is one "slice" of the images of his head--the dark bit inside the skull is a portion of what the stroke killed. The narrower skull is actually the synthetic bone flap/skull piece.  The schtuff outside of the skull is all the swelling and fluid build up.

And here's another slice a bit deeper.

Still waiting... No shunt yet‏

We are still waiting to get a call from the OR. The pressure is really bugging Wayne & the wait is bugging me!I'm on high-alert, constantly "testing" him to be sure additional decline doesn't go unnoticed. "Can you still move your leg? Does that feel normal to you? Are you OK? Count to ten with me. Copy my mouth & say your name. Are you OK? I love you. Are you sure you're OK?" That's what I like to call smothering mothering, or just ssss-mothering.Thanks for staying tuned & for all the positive energy I can feel around us--keep it coming. ;-)

Shunt to be placed

Wayne was admitted to Harborview last night.  I called 911 around 8:30pm because he seemed to be declining neurologically.  We were seen immediately at our primary care physician in the morning because Wayne was expressing concern about the fluid that was not draining but rather accumulating on his left temporal cranial area. 
I was mistaken with my idea that the plastic synthetic bone flap was solid--last night in the Emergency Department (ED), the Neurosurgeon explained the the pocket of fluid that wasn't draining was both pushing on the brain and on his scalp.  The fluid pushed on his scalp enough to begin to touch the top of his ear. The Neurosurgeon said, "I mean, that's an impressive amount of fluid."
So, they were thinking of "tap & drain" where they draw out the fluid with a syringe. Next would be to open the incision and place the JP Drain back into his scalp area. And most severe and permanent, would be to place a shunt.
The third option has been chosen by his Neurosurgeon.  He has not had anything to eat since Midnight in preparation for going back into the Operating Room (OR).  There isn't a time yet scheduled; the floor nurse that I talked to this morning stated that the OR calls them and tells Wayne's nurse/doctor when the OR is ready for him.
Our neighbor took care of Morgan and our new puppy Luna last night and into the morning. I'm heading into Harborview.  The neighbors are keeping Morgan for the day, and I just confirmed that my dad is flying into Seattle from Minneapolis tonight at 7:45pm.  Phew--that will be good to have someone here for Morgan, for Wayne, and for me.
I'll post more when I know more. He's on 4E Hospital at Harborview.
If anyone wants to help, here's some ways:
     come by and see Wayne,
     come hangout with me,
     I'll have Luna in the car with me since I haven't crate trained her yet, so you could come get her from my car & take her on a walk or hang with her at our house in Shoreline or your house,
.... trying to think of other ways and I can't right now...

I'll be in touch--thanks for reading our blog & for your continued positive thoughts and memories of Wayne, me, or Morgan that you send into the Universe.

EDIT/UPDATE: Luna is not in the car--she is at home and a neighbor is coming by to play with her and check on her. ;-)

Being Dissociated is Gr--... I mean Being DISCHARGED is Great!!

Wayne was discharged from Harborview this afternoon & is home resting. I forgot from the 2009 cranioplasty how swollen his left eye & cheek became 2 days post-op. He's excited to get out of the hospital & be home but is uncomfortable & in some considerable pain.
     He's doing well & I am glad he's home!! Plus, that means I don't have to go back & forth between Harborview & home. Thinking back to 2008 & how I was up by 7am & off to the hospital everyday ASAP... I have absolutely no idea how I did that. None. I couldn't even get to the hospital by Noon each day this time around!! No wonder I have a lot of feelings & memories that are coming up & being realized for the first time--can you say DISSOCIATION?!?
     Now whenever a moment, or a thought, or a comment is too stressful for me, one quadrant of my lip goes numb & it spreads rapidly down my chin & neck & I start to hyperventilate. That's what my body was doing this morning before I went to see him.
     Great defense mechanism, I guess, because it allowed me to handle the newborn that I had in my arms and the critical condition of my husband and best friend, Wayne Bacon.  But the result is I'm still dealing with things from the first 3 days after his stroke, and 2 months after the stroke, and 18 months after the stroke.  Mainly the first 4 or 5 weeks, but it's a weird way of living when you don't know when another memory will flood in and take over your body.
     Like the consent form at Harborview--it was such a defining moment to be reading over that on April 2nd, 2008 with so many supportive friends around me, my mom, my 3 week old daughter, and Wayne's mum on the phone... but now when I see a consent form at Harborview, I suddenly have feelings and memories and emotions that I didn't even know I wasn't dealing with previously but suddenly those memories and feelings are preventing me from dealing with the current situation!  I told the Neurosurgeon, "You guys should offer desensitization classes for that consent form for the spouses of craniotomy patients. That consent form carried so much weight (the night of the emergency surgery to remove half of his skull to save his life) that the image of that consent form is burned into my brain and I have to really focus to not dissociate when I see that form again."
     Onward and upward though, right?!?!
     I do everything I can to ensure that we enjoy life, that we focus on the moment, that we are grateful for the memories and togetherness that we have everyday, that we let go of the things that will not have a drastic effect on our path and journey...
...and that I just keep breathing, just keep breathing, **deep inhale**, **slow exhale**... Oh, hello there left lower quadrant of my lip, chin, and neck! So nice to have feeling in that area again.  Welcome back.

Scream for Ice Cream

I went to Harborview after I found someone to watch Morgan--didn't think she needed anymore scares about her daddy--and I'm pleased to report that Wayne is looking better. Not so nauseous, a bit more himself, and more responsive. I was choosing his meals for tomorrow from the available menu and he definitely had an opinion but he kept closing his eyes while trying to read the menu.  I think he is still in some considerable pain and seemed to just shut his eyes not necessarily to rest or sleep, but just to focus, breathe, and get through a wave of pain.
The lunch he was served today did not appeal to him--and I'm not even sure to whom such a sandwich would've appealed... maybe an emaciated dog scavenging for food.  The up side is, we at least know he's got his appetite back.  I asked if there was anything else the nurse could bring for him, and I suggested fruity ice cream; she brought two lil' cups of strawberry and raspberry ice cream and as she showed them to me and asked if these would seem okay, he perked up, waved her over impatiently, and grabbed them and started trying to gobble them down straight away.
The surgeons placed a "drain" in his head between the scalp and the bone/skull as they were sewing him up.  Generally, a drain is a tube that collects the blood from within the body under or near the incision and area of surgery. Where the tube is inside the body and not exposed, there are holes that suck-up all the blood accumulating in that area.  The suction is created by compressing a balloon type reservoir that is at the end of the tube (that the nurses place in Wayne's hospital gown's front chest pocket... how classy). When I got there this afternoon, the drain was gone from his head.  The nurse stated that it was there when she left for her lunch break but is definitely not there anymore.  That's a good sign--no unexpected amounts of bleeding or pressure building due to blood accumulating.
He also urinated a bit on his own in the late morning, but still didn't completely empty his bladder so they will be watching that today and tonight.
And by now you have figured out that he will be staying at Harborview one more evening, which is fine by me, and although extremely surprising to me, it seemed fine by Wayne too.  And if he's not getting dressed, demanding the discharge process be sped up, sneaking out, and escaping down the elevators, then it must be the right decision to keep him there for another night because if anybody is going to push the envelope, it'd be Wayne.

Is it normal to have a headache?

I talked with the nurse last night around 10pm and she said that Wayne hadn't voided any urine since the surgery, so they started him on IV fluids. He still isn't urinating on his own this morning, so that is something that the nursing staff will work on today.  They said he seems very dehydrated.
I called this morning to get an update from his nurse as soon as Morgan and I woke up, and I only got a brief update because she had to go and Wayne was asking for the phone--he is extremely nauseous and he seems to be in a lot of pain.  I do not remember this in 2009 with his previous cranioplasty but I also had an 11 mos old in my arms... and we were all elated to be getting the other half of his skull back into his head to cover up the remains of that left hemisphere. Sooooo, my memory could be skewed just a tad.
Even last night at 5pm when M & I left for home, he wasn't willing to engage... he could but seemed to want quiet, the shades drawn, and to be laid back down from being propped-up to eat his dinner (which he didn't eat either).
I'm not sure I'd go as far to say he's doing badly, but let's face it, when he was in the ICU and on death's doorstep I was stating he was "doing great!"  It doesn't seem as though he is in bad shape, but there are definitely some things that we need to get resolved today and I am a bit concerned.
It was the original plan and the intent of the neurosurgeons to discharge him today from Harborview. I'm not sure that's going to happen.
I've got to go get M & I ready to head into Harborview and exercise our new blue heeler puppy Luna before we head out, but I wanted to get at least some sort of update posted.
Thanks for all the positive thoughts and energy that you put out into the universe yesterday--I was frightened that he would "let go" once he was under the anesthesia, 'cause it has not been an easy road for him and can be so frustrating at times to not be able to express any thoughts or needs with words.  However, he is a fighter, he is loved, and he has a lot of love to give.  When M & I went into the Recovery Room yesterday around Noon, he was instantly reaching for and looking to console Morgan--SUCH a great dad!!!
We love you Wayne, and we believe in you!!

Wayne's Doing Great; We Are Happy & Relieved!!

Wayne's Doing Great; We Are Happy & Relieved!!

In recovery :-)

DOING GREAT! In recovery room & following verbal commands. (Morgan: you are going to be a photographer!... wait, you already are!)

SURGEONS ARE CLOSING UP SHOP

SURGEONS ARE CLOSING UP SHOP
Surgery has gone well up til now, they said they are sewing him up & the docs will update me soon.

BRAND SPANKIN' NEW HEAD

BRAND SPANKIN' NEW HEAD
Wayne's back in the OR now & Morgan & I are in the good ol' Harborview Cafeteria Surgery Waiting Room.

Friends come and go... and go

Email to fellow 'stroke wife':
 
1st year: Most friends stuck around for 3+ months & helped, but >3 months, they all began to fade. So I desperately tried to keep the friendships alive, stay connected. I tried to be 'more normal' around them, not talk about the stroke, or the hardship, or the loss and grief.
2nd year: I cried, was mad, felt more alone and abandoned than I did before from just the stroke. Didn't know I could feel more deserted than I already did from 'losing' my spouse & partner. I would contact the friends, expressed loneliness to them and to others, point-blank asked them 'why' they weren't returning my calls/texts/emails, but nothing changed. It actually got worse.
3rd year: I had completed the grieving of it, had enough waves of anger & grief & calmness. Then I was able to let go & then I could see the purpose of the relationships, the beauty in them, and bid them farewell and closed the book.
I've said many times, that it's not just the loss of the spouse that you're grieving.  It's the loss of friends, of the ability to be a working mother, of the familial relationships and dependability that you thought was there, the ability to articulate your ideas/feelings/basic thoughts.  The unexpected loss is the most painful—the greatest loss was my spouse's speech and functional capabilities.  However, I anticipated that my husband would never walk again, never talk again, never drive again--that's what the docs said from the beginning. Big, BIG loss--had a 3wk old daugther in my arms, and so much of what we wanted and always foresaw for ourselves was instantly gone.  It was painful … but never did I expect the loss of all of my/our friends. I never expected the loss of family members and having them blatantly state that they can't be there for you in the way you need them.
Now, my life has fewer friends, all 'new' friends, and I am so thankful for them.  They have chosen to be part of our new, complicated, full-of-reality life.  They are beautiful, generous, real, honest—wonderful people! They also only know my husband post-stroke, so there aren't any expectations, there's an acceptance, there's freedom and forward momentum in that.  I no longer feel tethered to that 'old life'—sad, but I had to let it go.  All of it.  I'm so sorry for the deep, deep pain that I know you are feeling right now.  Thinking of you—call me ANYtime!

Too...

Too painful, too traumatic.
Too blurry, yet too clear.
Too much with too little.
Too isolating, too deep.
Too real.

Too much unknown, too much wait-and-see.
Too few cairns for too long of a path.

Too draining, dissociative, depleting.
Too destructive, dispiriting, dividing.

Too young, too frequent.
Too many families having too much commotion.
Too much chaos becoming too normal.

Too much pressure to go unchanged.
Too many lessons, too much perfection.
Too much seems too important, when really there's not too much to get too stressed about.

Too short, too unpredictable.
Too many moments to try to freeze in my mind.
Too precious these moments without any words.
Yet, too lonely while sitting right next to "the one".

Too much taken for granted even though we were too aware of how quickly it can all change.

Marked Milestone!!!

Julie Bacon is a proud momma, wife, & stroke-wife survivor! Morgan doesn't have school today, I'm @work, & Wayne Bacon is watching Morgan today all by himself... & that in itself is absolutely amazing considering where we were 3 yrs ago, BUT what makes me inexpressibly GIDDY is that when I called to check on them at 11 AM, THEY WERE IN THE BATHROOM AT THE NORTHGATE MOVIE THEATER GOING TO KUNG FU PANDA 2 together!!! I am BEAMING!!!!! :)

and the reason I mention the bathroom is because even that is an awesome achievement or milestone for a dad to take his daughter into a public bathroom. three years ago on May 24th, he was discharged from Harborview... unbelievable.. leaps & bounds, Wayne Bacon! Leaps & Bounds!

Foreclosure/Auction: 18339 Dayton Pl N

Hello there, wonderful neighbors:
 
This is Julie Bacon at 18339 Dayton Pl N.  Some of you know us and our story: my husband, Wayne, had a stroke on April 1, 2008 when Morgan, our daughter was only 3 weeks old.  We'd only lived in the neighborhood for 9 or 10 months, and although we hadn't met any of you, many of you stepped forward and were extremely supportive and helped us tremendously during the past 3 difficult years.  You cleaned up our yard, weeded our garden, took our trash bins in and out, brought us dinner, had us over for dinner, babysat my daughter, responded to my multiple desperate concerns about where Wayne was because he wasn't answering the phone while I was 'stuck' at work downtown.  You took care of our beautiful (and now deceased) golden retriever Tucker, you came over and checked that we were okay every time an ambulance showed up... THANK YOU!!!
 
I truly believe I could not have come out of the past three years as "intact" as I am if I had not had your support and help.  And with that, I am sad to say that our attempts at keeping the house and staying in the neighborhood have not been successful.  The loan modification was approved by the investor on Monday but was denied Wednesday by the Closing Dept. based on a few factors (which to me feels like they were just listing a few reasons for them to not push this through the last bit of red-tape).
 
The house is set to be auctioned on March 11th.  I think I am finally going to "let go" and move onto the next part of our journey. I am looking into a few last options, but really it's to minimize the effect on my credit than to attempt to "save the house".
 
I wanted to let you know this and give you a heads-up that this will be occurring.  Maybe someone wants some investment property in the neighborhood... I don't know--it just felt right to contact everyone and let you know, as well as extend our deepest gratitude for the friendships, support, and assistance you have given us these very difficult 3 years.
 
Although we will miss this neighborhood terribly, I have my head high, my eyes looking forward, and am excited to see where we'll rent a house in the next month and see what else the future holds for us... we can only move forward. :)
 
Thank you again.

Sincerely,
Julie Bacon
 
www.thebaconfamilyfund.org
TheBaconFamilyFund.Blogspot.com
julieannbacon@hotmail.com

Losing Wayne

I feel as though I am starting to lose the memory of the pre-stroke Wayne. And you know it's bad when you watch a video of the two of you from before the stroke, and it just doesn't even feel familiar...
I MISS HIM SO MUCH!


... maybe only when that memory fades, is when the true healing begins.

Maybe I've been in limbo this whole time. I thought from 18 months to nearly 3 years post-stroke, that I've been doing a great job of healing and becoming present again... but maybe I have to allow that old life, that previous relationship, that man I loved with all of my heart... maybe I have to say 'GoodBye' to all of it in order to accept this oh-so-different marriage, life, raising a child, single-driver, life-partnership...

I don't want the memory to fade... but I don't want to stay this mournful, this lonesome, this isolated, this fearful ... I want to move forward.

I thought I was moving forward, but the fear I have tonight of losing a "video image" of the old him is indicating to me that I must be desperately clinging to the old: the old life, the old "rules" we operated under, the old conversations, the old partnership, the old plans, the old hopes, the old frustrations, the old good and the old bad.

The visual I'm seeing is that I'm underwater, holding my breath, dark and deep water surrounds me, the surface is not visible, my face is illuminated though with bright, yellowish light, bubbles sweep from my mouth past my cheeks and into my hair, my eyes are wide and desperate looking, hair floating and billows when disturbed by the bubbles from my mouth, and I'm holding onto these items that give me meaning, give me purpose, give me memories full of love and laughter and connection. They define my 9 years with Wayne before the stroke. They are my entire adult life.... these items are keeping me underwater though... I have to let them go... I have to release them and get to the surface.

But, I keep clinging to these memories, to the identity of Wayne&Julie, to the visual of Wayne walking normally or even running or working in the yard with two strong arms. I cling to the conversations we used to have in the backyard. I visualize him swinging in the hammock and rocking himself with a push-off of his right foot. I cling to the late night two-step dance we would do every Friday night when we got home--Billy Joel, "She's Always a Woman". I cling to our hopes for this house. I cling to our talks about what kinds of parents we would help each other be. I missed just being new-parents with him (as we were in 2008 before the stroke occurred). I hear us goofily singing "Come What May" to each other (from Moulin Rouge) the week of our wedding... over, and over, and over again. LOL :)

I keep holding all of these items close because they don't deserve to be at the bottom of the ocean, deteriorating and being forgotten, and not being re-played over and over again, and his stupid jokes he used to tell laughed at again and again in my head... I want so desperately to hold onto these, but no matter how much I try right now... they are slipping through my fingers. I can't hold on, no matter how much I want to. No matter how much I try to force my mind to remember and see it, to hear it, to just feel it be "normal" one. last. time.

Seizures & Meds

Here is a post I made earlier tonight on a Seattle Brain Injury MeetUp.com Group Discussion Board:

Background info: my husband (left-hemisphere stroke in Apr. 2008) started having seizures in Aug 2008. He has severe aphasia and profound oral apraxia and cannot talk or write. He can only draw, so in turn, we are left wondering how each med really affects him. It's up to me to report to the doctors anything I've noted since he started each med. So, this is all me (wife and caregiver) reporting this info, not the patient/stroke-survivor/person on the seizure meds.

In Aug 2008, he was put on Dilantin (phenytoin). I really wanted to get him off of the Dilantin as I noticed his comprehension and awake-time-alertness decrease significantly (and there wasn't much of either of those to begin-with anyway). Another tidbit regarding Dilantin, our neurologist/epileptologist stated that some of his students in his UW classes have epilepsy and they have commented to him that while they were on Dilantin they would have to re-read their lecture notes several times to just begin to grasp the info, and then when they went off of Dilantin they felt their IQ increased by 10 or 20 points--they seemed to "get" stuff the first time they heard it, they didn't have to study as hard as they did when they were on Dilantin--I found this info VERY interesting and useful as my husband was relearning to do SO much regarding basic living (e.g., getting dressed, eating with a utensil, etc.) as well as more complex things (e.g., writing, copying letters, etc.).

Dilantin didn't control the grand-mals, so then Lamictal (lamotrigine) was added a few months later to his regimen.

The Dilantin and Lamictal didn't control the seizures either, so then a third anti-seizure med was added several months later (maybe 6) which was Topamax (topiramate). The way the neurologist/epileptologist explained it to me was that Topamax was originally created for people with migraines and it works on several proteins in the brain (I think I recall him saying "7 proteins"), so our hope was that since the other meds hadn't controlled his seizures, this one would increase the likelihood of controlling them since it works on more proteins in the brain.

He was still having 3 to 6 grand-mals a week and in Aug 2009 he had three grand-mals within 24 hours. At that point his doc prescribed Lorazepam for him to take if he ever had 2 grand-mals within a 24 hour period again. He was admitted for long-term video-EEG monitoring (LTM) in Sept. 2009 and after 5 days, they found the location in his brain that the seizures seemed to be starting or being initiated by his brain--it was the motor-strip and specifically, the part of his left, top brain that controlled his right hand... so it was decided that we would not do the brain surgery to remove that piece of his brain (to control and stop the seizures from being initiated) since we didn't want to destroy the chance that he would regain some of his hand and arm movement, or possibly affect any of the walking-ability that he has regained since the stroke.

As he was going to be discharged from that LTM, I asked that he be put on Keppra and to not be put back onto Dilantin (since they remove you from your anti-seizures meds so you'll have seizures while in hospital and hooked-up to their EEG cables). Also, I had heard great things about Keppra from a lot of people and via my own research (i.e., Kessler Institute for Rehab was doing a clinical trial investigating Keppra's effect on Chronic Aphasia--as though it might help it).
Another component for me not wanting him to go back on Dilantin was that I overheard hospital roommate (also there for LTM) say that they heard that Dilantin can actual increase the amount of grand-mals you have if you're having more than just petite and/or partial seizures. Argh! That frustrated me to hear that--no wonder his grand-mals were increasing... but then the doctors should know what they're doing, right?!?!?!?!
Then, the last med we have added to the 'ammo' against seizures is Lorazepam. Again, this was from overhearing our hospital roommate talking to his doctor on the other side of the curtain. He wanted to leave the LTM since he was having so many seizures, and the doc suggested he stay one more night but that he's give him some lorazepam to calm his nerves and to not let the seizures spread as far.
Ding, ding, ding--a light bulb went off in my head... "Couldn't we use that at home to control the seizures when my husband feels the grand-mal starting?" Sure enough, we now always have one 1mg tab in his pocket and some in my purse. He can sense something when a seizure is starting, so he does his 'routine' to stop the seizure: a lot of stretching his right hand, swinging his left arm, bending at the knees/very controlled squatting, and usually all of this takes place in front of the mirror--I think it helps him to see his body or something (again, since he can't talk or write or understand a lot of what I say so I can't really ask him, I can only guess). If it continues to get worse, he also opens the blinds, turns on the lights, opens the windows--he seems to like it cold and bright. If it continues to progress, he'll clear everything out of his way in a pathway, like the hallway, and he'll pace up and down the hall while breathing very controlled and swinging his left arm in an exaggerated way. If it's still not getting better, then he'll take a 1 mg lorazepam and go into the bedroom and continue the stretching, swinging, and squatting routine in front of the mirror.

He is currently on Keppra (1000mg 2xday), lamotrigine (400mg 2xday), a decreasing dose of topiramate (was on 50mg 3xday for 12 months & is now on 25mg 2xday--hoping to get rid of this one as he starts to talk again since it inhibits word-retrieval), and the 'as-needed' lorazepam (1mg at a time, not to exceed 5mg/wk).

I am happy to report that with the Keppra and the lorazepam on board (along with lamotrigine and topiramate), and maybe even his 'natural' methods of controlling the seizure, he has not had a grand-mal since Sep 2009. I can't say that I miss seeing him lay on the bed crying when he knows one is coming-on, and then convulse and foam at the mouth and stop breathing and turn blue, and then slowly after 30 minutes start to 'come to' again. I think the 30 minutes after the seizure also reminded me of the initial stroke, especially when he couldn't focus on me as though he couldn't even see me, couldn't move his right side, couldn't talk, couldn't sit up, kept looking up to the left like something was up there... just freaked me out more than the seizure itself I think.

Man--this has gotten long--sorry about that.
~Julie

Acceptance or Resistance

Is this Acceptance or Resistance that I'm feeling?

I am at a point of what feels like so many 'heavy' decisions but I don't even know 'which way is up' right now. I feel all turned-around and unable to make even one big decision.

I was laid off in February and kept Morgan in daycare because I thought I would find work fairly quickly; now I am struggling to forgive myself for paying-out that money each month. However, with that said it's so risky to forfeit a daycare spot downtown and that seemed to be a dumber choice at the time than keeping her at home and saving money.
I accepted the fact that I didn't find a job straight-away and used the last few months to grieve and finally begin to deal with such a big loss and the daily struggles that go along with living with life after stroke and Wayne's eagerness, yet inability, to be independent and a fully-functioning adult.
I have spent hundreds of hours applying to numerous 'discount' programs based on being low-income and disabled. We were accepted to some (i.e., Seattle Senior Services' Minor Home Repair and City of Seattle's City Light and Public Utilities discount program) but have been denied many others (e.g., King County Home Repair; DSHS--food stamps, Medicaid, Cash benefits, WIC, Welfare; etc).
I need weekly counseling appointments because I am finally dealing with the grief and loss of Wayne's stroke, but I can't afford the $35 copay for each visit... that's about $135 a month! And in the midst of trying to decrease our monthly output so that our home loan modification can be approved, I can't justify $135/month on my financial output spreadsheet.
I am now looking at changing Morgan to a school closer to home that is cheaper and to only a part-time status. It has been good having her gone and in a stable place during the day so she hasn't had to witness my melt-downs. With all the 'work' that I have been doing in regards to the low-income applications for discounts and assistance programs, I would've likely been pushing her to the side and telling her to be quiet and setting her in front of the TV anyway. I am BUSY during the day. Even now, I'm wondering if I should just keep her home with me to save on daycare all together... but if I find a job, I'll need her in daycare and it takes a month or more to get into one, if there is even an opening at all.

I feel like I step onto one path and that's not right, so I try another path and that's not working for us either...

As I told someone yesterday, actually it was Morgan's daycare administrator--I find myself talking to just about anyone who will listen these days--I have no idea of what lies ahead and therefore I can't plan for it. One example is I don't know if I'll have a job...

Is this what happens to families that have a stroke at such a young age and can't draw-on retirement early?
Is it just part of the path to lose our house?
Is it just part of the path to be in the 'black-hole' of earning too much to receive aid but not enough to get-by?
Do I just need to resign to these facts and "accept" them or is it good and diligent to continue to "resist" these as truths? Acceptance... or resistance.... ? Maybe it'd be easier to stop resisting all that I'm being told...

Maybe I need to just accept that Wayne has stopped progressing.
I might just need to accept that I will never have a full-functioning spouse again and that it-is-all-on-me.
Just accept that we will lose the house.
Maybe just accept that more than 50% of who I am now is a 'caregiver'. I mean, that's what happens when you become a parent, right?
Maybe I just need to accept everything that has plopped itself on my plate and say, "Okay, thanks for defining my new life for me" and stop fighting and pushing-forward and proving everyone and everything to be not-quite-correct and that we can do this if we just put our minds to it and a lot of effort behind it.

Accept all that? I do feel like that would be easier, much easier than resisting it all. But that would mean the stroke changed me. Especially that it changed the one attribute of myself that I'm not ready to relinquish yet.
Anyone who knows me (and I am reiterating this mainly to myself to remind me of who I was before the stroke and who I continue to be and want to be), we know that I don't take the 'easy path'... I take the path less traveled, I take the more difficult but honorable path.... I will continue to fight that this stroke will not destroy us and that we won't lose the house and that Wayne will continue to get better and that Morgan will not be tainted by the effects of the stroke in our lives...
I will continue to resist because that other path just isn't okay with me. Not yet anyway. But maybe in time, that's what happens. The resisting wears you down and you end up accepting....

I guess we'll find out in the weeks and months... and dare I say years... to come. Yeah, it's probably gonna take years.

Thanks for reading. Love, Julie

Who am I? (other than a "caregiver")

Here is a “Welcome to the Caregivers” speech that I gave today at an Aphasia Day Retreat for Stroke Survivors and their Caregivers:

Good Morning—

My name is Julie Bacon, I am 34 years old, and I am married to Wayne Bacon who had a stroke 2 years ago. I usually describe myself and my role as a caregiver as defined by the events that surrounded Wayne’s stroke. Right now, I am going to try to talk about me and who I am and how I was affected by the stroke and not tell ‘his story’ (even though I feel like the description of his stroke and length of stay in the hospital, surgeries that were done to save his life, and condition in which he came home helps to define what type of caregiver I have to be and what is on my plate)… but, here is my story:

On April 1, 2008, I was a 31 year old new-mom. I had just given birth to our first child, Morgan, a girl 3 weeks prior. It was a quick and easy (so to speak) labor and delivery, and I felt empowered as a woman and a person to know what I could go through and survive. I felt more connected and interdependent with Wayne than ever before—his support during labor was amazing and I was so glad he was there by my side the whole way. Wayne and I had just bought our first home 10 months prior and were excited to have Morgan grow up a bit so we could start our renovations and landscaping plans that we envisioned when we bought the house. My family lives in Minnesota, and his in New Zealand.

My mom flew into Seattle on April 1^st to meet her new, 3-week old granddaughter. She and I had just arrived to our Shoreline home when Wayne pulled up—he just got off of work, was going to take a shower and then cook us some dinner. He never came out of the bathroom. Once the ambulance came and left, I tried to rush and get everything together to follow the ambulance but as a new mom, I didn’t know what to pack, I had only been out of the house once before with Morgan and the diaper bag and the stroller and jingling toys… I had to stop for every stoplight on Aurora and all I could think was, “Hold on Wayne… just don’t die before I get there.”

Everyone tried to convince me to sleep that night in the ICU waiting room, but I couldn’t… my best friend was lying in the ICU seemingly completely obliterated… he looked confused, not present, an empty slate—his personality seemed gone, there was no voice, no recognition, no eye contact, just wandering eyes, odd head movements, and an extremely fidgeting left side. It was so scary to me—I realized, even though I’m 31, I would never be willing to lose my best friend, spouse, partner. I envisioned myself as an 85 year old woman with Wayne in the ICU… I would be sad to say “good-bye” to him at some point. And unfortunately, I now know what that’s going to feel like.

That trauma has affected me—I don’t think I will ever be the same as I was before April 1^st 2008. I am determined to make myself better in some way, but I don’t yet know who that will be. This may sound strange, but I feel like an addict who doesn’t know themselves without their drug of choice—I don’t abuse any drugs, I’m not an addict, but I am just as lost as an addict going into rehab for the first time. I feel like I need to go to a month of inpatient counseling to just learn who I am, what I like, what type of person I want to be, and then be put back into this situation and my life.

I want to describe the pre-stroke Julie Bacon… but I feel like I can barely remember her. It is a struggle to remember me, or interactions that defined me before the stroke. The moment that helps me remember who I was before the stroke was an incident where someone was accusing me of being extremely selfish 2 months after Wayne’s stroke—it was someone that I didn’t know very well and I remember saying to them, “I’m sorry you didn’t know me before this, because I think I was a very giving, accepting, loving, patient, unconditional, energetic, full-of-laughter, and fun-loving person. If you had known me, I think you’d be able to be a bit more patient with me right now. Now is my time; now is the time, when all the love and patience and answering of 3 AM calls from crying girlfriends pays off for me… I get to have my friends hold me up for once.”

I was athletic and loved playing beach volleyball, I was vivacious, I was social yet enjoyed being alone and doing Sudoku with music playing in the background, I knew I always wanted to be a mom, I never thought I would get married but when I met Wayne I knew I couldn’t live without him being my best friend everyday forever, I took my dog to the dog park every Saturday morning at 7 AM so he could swim for an hour with not many dogs around because that’s how he preferred it, I walked around Green Lake with girlfriends, I went dancing once a month and had fun at happy hours with Wayne, I played pool and darts… I was thoughtful and methodical in my planning and decision making (that is, if I could make a decision at all… Caesar salad, soup… Caesar salad, soup? Ahhh!!!! I can’t decide!).

I also worked 50 to 60 hours a week… at the least, I always put my needs last, I worried way too much about what others thought of me or my actions and making sure that everyone else was always "okay" and felt safe, I focused too much on self-evolution and introspection and not enough on just being and accepting myself as “okay" right now at this very moment, I worried about my loved ones dying and leaving me alone, …

All of this had to go by the wayside—some of those attributes I was ready to be done with and the stroke was a definite point in time where some of those characteristics had to die. And I am grateful for that—I am glad that my work-life balance is more even, I have found peace in learning to ‘just be’ rather than push forward all the time, and I’ve realized “I’m a pretty okay person”. And I’ve somewhat lost the fear of one of my loved ones dying… I know what it feels like now, or almost. I know I will be able to deal with it and survive.

The other parts of me will come back—but only with time, and self-nurturing. One counselor told me: in order to survive and "make it" as a caregiver, I would have to delegate whatever I could to other people and return to just being a mom, a wife, and a friend again.

Why today is so important is so that we can come together, and know that we are understood and not alone in what we are going through, learn some tools and educate ourselves. The caregiver group that meets every Saturday is essential to my ‘recovery’; I have sometimes compared it to AA—I need to have somewhere to go, regularly, to find support and help.

Cheers Wayne! (and back at me too)

Today is officially the end of the clinical trial for Wayne (with the exception of the 2-month post-treatment testing in late-July).
It felt sad, as I knew it would, but it also feels like we've accomplished a big goal. Woo-hoo!
We were at the UW Aphasia Lab (http://depts.washington.edu/sphsc/labsites/kendall/about.htm) everyday for 8 weeks. I ended-up feeling like part of the staff at the UW Speech & Hearing Clinic--a permanent fixture in the waiting room. (Although, this ended-up being very conducive for my efforts to getting the logistics squared-away for a Caregiver Support Group specific to Strokes and Head-Injuries to be formed, so no time wasted.)
Wayne and I got home and had one beer each on our front step and just beamed with gratitude for the busting through of the "roadblock" of his speech--apraxia, the elation regarding the words that he has regained, the comfort in the hope we gained and the assurance of knowing that with enough time and effort he could speak again to some extent, and the exhaustion of having to be somewhere everyday (very taxing for Wayne at this point).

Cheers Wayne, (and since he can't type, I'll say it for him...) Cheers Julie! That was tough, amazing, and so incredibly worth it! Well done!

Bittersweet: Wayne's Clinical Trial is coming to an end

Although I would gladly fight for the clinical trial Wayne is involved in to be extended since he's making such amazing progress, the fact that this week is our last week of daily treatment (2 hours/day) is exciting to me.
[Note: I actually already have fought for it to be extended twice--it was originally only supposed to be 4 weeks of daily therapy and we got it extended twice to be 6 weeks in duration!]

Wayne is so exhausted everyday after the two hours of intensive therapy that he doesn't really do anything else during the week. He comes home from therapy and naps anywhere from 2 to 5 hours; the therapy is very taxing on him, and like a newborn, he must sleep to "fix" the new information into his brain.

He usually is very helpful around the house: he sweeps and vacuums when the floor is "too far gone"; he completely maintains the kithcen (by emptying and loading the dishwasher as needed, washes dishes, wipes down the counters, etc.); he helps put away the groceries; he does his own laundry, folds it, and puts it away.
However, since he's been in therapy, he has been too tired to do anything around the house; I have been totally okay with picking-up-the-slack since he is thoroughly enjoying therapy, gaining confidence in himself again, and progressing verbally due to it... but let's be honest... it'll be nice to have some help around the house again.

We are so grateful that he's progressed as much physically and cognitively since the stroke as he has--the fact that he can do all these duties around the house is incredible!! But, there's a lot more to life than the dishwasher, clean counters, and his individual laundry... so for him to have "mental space" again next week to do these tasks again for our family will be very beneficial to my well-being and the relationships within our household.

Speech!

Wayne has been involved in a Clinical Trial for speech at the UW for 5 weeks and it SEEMS TO BE WORKING! He said Morgan's name for the first time last Thursday! He said his full name, "Wayne Bacon" on Friday.

So thankful for the therapists and this clinical trial!!

Hello! Welcome! A new place for our blog

I am going to attempt to continue our blog on this website regarding our journey, Wayne's recovery, and life after a stroke in a young family.

Look forward to continued visitors and support by you all.

Sincerely,
Julie

UPDATE #2: Cranioplasty is scheduled: March 6th

Date: Friday, March 6, 2009, 4:12 PM

Update: I went back to see Wayne at about 1 PM in the Recovery Room area and he was groggy from the anesthesia but looked really good. He was extubated (breathing tube out of his throat) and I'll say it again... he was looking really great!

The original plan communicated by the surgeon was to have him moved to an ICU floor for 'close watching' until tomorrow (Saturday) morning. At that time the plan was to move him to an acute care floor, where patients move when they are more stable.

So, what actually happened was, while I was in the Recovery Room talking to the nurse, he said that Wayne was moving to the 6th floor in the Norm Maleng building which in an acute care floor. I said, "Really? They said he'd go to ICU." And the nurse confirmed that he was doing so well that he was being moved straight to the acute care floor. YAY!!!

I have gone in to see him twice at 2:00 and at 3:00 and he is just looking so great! Three friends have also seen him now and they are AMAZED! They said they couldn't believe how great he looked.

I'll send another update when I can. Morgan is napping right now, so "all is good". ;)

Sincerely,
Julie Bacon

UPDATE: Cranioplasty is scheduled: March 6th

Date: Fri, 6 Mar 2009 10:55:50 -0800

So, Wayne was taken back at 7:40 from the admitting room.

And now I just got an update that "they are closing". So that seems to be GREAT news that it's done seemingly "early" (and the fact that no one came out to tell me of any complicatoins during the surgery).

Soooo... YAY!!!!

I was also told that it will be anywhere from 30 minutes to one hour before I get to go back to see him. But, Dr. Kim, our surgeon, will be coming to talk to me shortly and telling me more about the surgery, how it went, etc., etc.

I will be in touch more in a bit (or when I can). I met some great ladies in the waiting room, so they have been talking with me to pass the time, telling me their story, and me telling ours. Right now one of the gals is walking around with Morgan so I can type this.

Also, I'd like to say THANK YOU TO ALL OF YOU for all of the positive energy you have been sending us, your hopes and dreams for us, helping us to succeed with the hurdles we've encountered this year, and for your continued support and love.

Sincerely,
Julie Bacon

Cranioplasty is scheduled: March 6th @ ~8 AM

Subject: Cranioplasty is scheduled: March 6th @ ~8 AM
Date: Mon, 2 Mar 2009 10:39:06 -0800

Hello there, everyone.

Well, I am very excited to be emailing this news--we are scheduled for surgery this Friday, March 6th.

This surgery is called a "cranioplasty", which in Wayne's case is the replacing of the left half of Wayne's skull. That plate has been frozen at Harborview since April 2nd, 2008 and they cultured it and there is no bacteria, so it's "a go" in terms of using that original piece of bone (if the bone wasn't going to work, they would have created a titanium or plastic plate with his original bone as the "mold").

The check-in time is at 6 AM on Friday, March 6th and the nurse said that Wayne will be taken back to get prepped for surgery around 7:00 or 7:30 AM. So, he'll likely go into surgery around 8 AM, and although they haven't given me a time-frame, I would think the actual surgery will take about 2 to 3 hours, and then he'll be in a recovery room for about another hour. At that point (about 11 AM or 12:00 PM?), from what a nurse told us, he'll be taken to the 2nd floor ICU and then we will be allowed to go back and see him. He'll spend the night in ICU and will be transferred to an "acute" floor on Saturday morning (probably 3W, where he was from April 10th-April 24th, 2008). Then, if all goes well, he'll be discharged on Saturday afternoon. (I want to say, "Are you joking?!" to the doctors. Ack!) No, but seriously, we'll be fine--it'll be good to get him out of the hospital (where infections like MRSA and sicknesses run rampant) and home with us. Plus he'll have his noggin back together--all will be GREAT! ;)

Please feel free to come by on Friday and hang with me and Morgan in the waiting room, or on Saturday to say "hi" to us and take a walk with me and Morgan, or take Morgan for a walk--I will have my cell phone on and feel free to text us as well. We were told that we'll be in one of two surgery waiting rooms; one is on the Ground floor in the new Norm Maleng building, or the other one, which a few of us know far-too-well, is in the back of the cafeteria (where we all spent that 2nd night of this whole journey waiting to hear if Wayne survived the craniotomy).

Also, feel free to send positive energy into the universe under Wayne, my, and/or Morgan's name. Even if it's just remembering a funny story about him/us/me/Morgan, or visualizing his brain healing and staying intact and not bleeding during this surgery, or visualizing him smiling and hugging me & Morgan afterwards, or thinking about him talking again one day... as I said that 2nd night when they were doing the craniotomy, "Just remember him like he was... visualize him walking, talking, and being Wayne..." send that out into the universe... We will get him back!

I believe with all of my heart, soul, and being that everything will go well and that there will be no complications (easy peasy, as Wayne would say).

Alrighty--I better get back to work. Just wanted to let you all know this information.

One note for international friends and family: we can't receive internationally-sent texts to our phones, but I found out that we can receive emails to our phones, which are counted like a text--my phone is 2064787127@vtext.com or Wayne's phone at 2064780258@vtext.com. We only receive the first 160 characters, so type the email like it's a txt.

Sincerely and with Much Love,
Julie Bacon

Movin' on up

Saturday, May 3rd: from Julie
We were moved to the “executive suite”, as the nurses called it, of the rehab floor at Harborview. I said to them, “There have been plenty of patients here longer than us—shouldn’t they move into it before us?” the nurses stated that we are such nice people and we have the baby and it just seems to suit us better than other patients and their families at the moment. That was so generous of them. So, we have a couch, a dining room table, and a refrigerator which is VERY HANDY seeing as how I’ve been trying to stash food items and milk for Wayne to eat between meals (his metabolism is still very high).
The DJ Night at The George & Dragon Pub was brilliant! What a great group of such wonderful, caring people. It was amazing to feel such support and love from all the people that know Wayne and I, as well as from complete strangers! Thanks to everyone who made that night a success!! And man did it feel good to get-my-groove-on! Haven’t done that since I was pregnant this past year—last time I really danced was June 2007 at the George & Dragon Pub in their car-park during the Solstice Parade.