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.

Fire those muscles

Friday, May 2nd: from Julie
Today, the physical therapist said that he seems to have the mechanics of walking in his right leg but she’s not quite sure how he is doing it because the muscles aren’t “firing”. “I don’t know how he’s doing it—and I don’t care how, ‘cause he’s doing it. But I don’t know.”

Please Sir, may I have some more?!?

May 1st:Quick update on Wayne: He’s in therapy for several hours a day and he’s doing very well. He has been attempting to walk using the upright bars and with assistance from the therapist. He was able to move his right leg forward on his own. Still no speech, but he’s nodding and doing thumbs-up. He’s been eating on his own and is now doubling his portions. All great news. Due to Wayne’s extensive therapy, he is very tired at the end of the day. To allow him to rest and regain his energy, he is not accepting visitors at this time. Ted returns to New Zealand.

Family Conference--one I'm actually excited about!

Wednesday, April 30th: from Julie
We had our first Family Conference today. In the rehab department, they have a weekly conference call with family members and update Wayne and his family on how he is doing. They were all really impressed with how hard-of-a-worker he is. They set a projected discharge date of May 24th for Wayne to come home! They suspect he will be 100% mobile within our home, and that is walking, not wheeling!!

A Thank You from New Zealand--Wayne's Family

April 29th: A Thank You from Wayne's Sister, Carleen, and Family. I just wanted to send my sincerest thanks to you, and all of Wayne's wonderful mates, friends and well wishers. "The Orphan Family". I still cannot believe the amount of support, generosity and love that has been shown towards Wayne, Julie, Morgan, and our families. I am so proud of him. The support network Wayne and Julie have is immense to say the least. Many thanks for all the meals that were brought to the hospital whilst we were there also. A HUGE THANK YOU TO EVERYONE.
It was a pleasure to have met everyone, even though I know I have only scratched the surface of his many wonderful friends and 'orphan family'. Although I wish it could have been under better circumstances, it was great to meet everyone just the same. Next time we will all be partying together and celebrating how far Wayne, Julie and Morgan have come together as a family. We will all be able to let our hair down, let loose, party hard, dance hard, and 'let the good times roll'!!!
Everything just seemed so surreal and even now it is still hard to believe. But Wayne is a fighter from way back and is full of determination and energy. With the support he has from his wonderful wife and friends he will pull through this and is already progressing ahead in leaps and bounds. Nothing will keep him down for long! That's my brother! Go bro go!!! THANK YOU, THANK YOU, THANK YOU. I just don't know how to thank everyone.Well guys, thanks a million and please give my love and sincerest thanks to everyone. You are all one in a million and it is a blessing to know Wayne and Julie have such wonderful support and friends. It is very frustrating living on the other side of the world, but knowing they have such awesome friends makes that light shine just that little bit brighter. :-)

Familial Male Support from Down Under

Tuesday, April 29th: from Julie
Marsh, Wayne’s younger brother, flew over from Australia today. Wayne really was amazed to see him—thanks so much, Marsh, for coming over. It’s been so important for Wayne to see his family and I can’t imagine how much it has helped with his rehabilitation!
Wayne started pulling his right leg forward on his own! The hip flexor seems to be working!!! “Leaps and Bounds, Wayne!”

Lots of Activity on April 26th!!!

April 26th: from Dave & Kris We saw Wayne on Saturday. He’s looking good. Julie, Ted, Kris and I took him out for a stroll around the hospital garden. I’m sure it was nice to get some fresh air. It was terrific to see him out and about. He seems to be progressing every day. What we saw a couple of days ago compared to just a week ago with his communication skills is huge. His eyes are clearer, he nods and puts his thumb up when answering questions. It’s awesome. I can’t believe how far he’s come in a short amount of time. As everyone knows, he’s a fighter. I’m looking forward to the day when we can sit outside around the fire pit with him again.The Kangaroo & Kiwi Benefit
Thank you to everyone who made the K&K Auction/Benefit such a huge success. What a fantastic turnout! It was a great night of fun with friends and support for the Bacon family. A special thanks to Brad and Patrick for opening up your pub for a wonderful evening.
Saturday, April 26th: from Julie
Wayne got to see his dad today for the first time—he was so stoked to see him walk through the door!! Yay—thanks for coming over Ted!
Ted had a great idea to take Wayne outside—so he went and asked the nurses and we got a doctor’s order that approved us to take him outside. So, we took him for a stroll outside and Wayne loved it. Really felt good to get some fresh air with Wayne and Morgan—first tie Wayne had been outside Harborview since April 2nd!
The live auction that the Kangaroo & Kiwi Pub held was AMAZING! What a great turn-out and what generosity and love (and what fun)! Thanks so much to everyone!!!

Full-On

Friday, April 25th: from Julie
First full day of “full-on” therapy—very tired and not comprehending very well this evening—therapy took a lot out of him. Ted, Wayne’s dad, arrives tonight.

In Patient Rehab--what a gift!

Thursday, April 24th: from Julie
We were moved up to the rehab floor today! Very exciting—Wayne was getting a bit stir-crazy the last few days on the Neuro floor. Today Wayne said more words! He said, “Yeah” in response to a question and he was trying to soothe Morgan when she was fussing and said something like “Oh-do-do-do”. It was really great to hear! He also started a regular diet today—so pork chops and broccoli and ice cream and salad and cake… and he chowed it all down within 15 minutes!

"No" can be powerful

Wednesday, April 23rd: from Julie
Again, amazing progress today! Wayne is nodding and shaking his head more and more and with more intent and appropriateness. This obviously makes it easier to communicate with him and I would have to guess less frustrating for him since he is able to tell people what he wants or doesn't’t want when asked. He didn’t eat quite as much today at dinner, but still did a decent job of it. As I do everyday, I tell him this is just temporary, he’s not going to be bed-ridden or dependent on others forever. “You are going to come home to us, and play cards and darts in the backyard with me, build Morgan’s Treehouse, and do everything we planned to do. Okay?” I then continue on to tell him that he’s doing things today that he wasn’t doing a day ago, and that 3 weeks ago when it happened, he couldn’t do nearly anything that he’s doing today. He looked at me, and I realized that he wasn’t sure what happened even though I’ve been telling him everyday what happened to him. I told him he had a stroke, and he looked really shocked. “Yeah, pretty freaky. But you lived, Wayne! Honestly, you could have died. But you’re here, and you’re fighting back!” So, he was a bit freaked out and saddened after I told him the whole story. Then about 3 minutes later, I changed Morgan’s diaper and then asked if he wanted to hold Morgan again. He shook his head, waved his hand indicating no, but then also got out a mumbley “No”. I opened my eyes really big and said, “ DID YOU JUST SAY ‘NO’?!?! Wayne!! That’s your first word. You haven’t said anything for 3 weeks!!! Oh my gosh.” And I kept going on and on and he had a happy, shocked, “oh my gosh” look on his face too. Then I started crying, he got a bit teary, and I said, “See! It’s temporary. This is not where you’re going to be for the rest of your life!!”

Mayne, I mean WAYNE!

Tuesday, April 22nd: from Julie
Wayne makes progress everyday. Speech Therapy saw him today and he passed his swallow evaluation and was given water to sip on through a straw. The nurses ordered him a pureed lunch and dinner and Wayne polished both of them off nicely (or entirely). The pureed meals consist of pudding, applesauce, mashed potatoes, milk, juice, etc. I gave him a few glasses of water and I’m sure it feels so great to have fluids running down what must be a very dry throat. He was able to follow commands (verbal), do some ‘modeling’ (visual cues and commands along with verbal), and he wrote his name while the Speech Therapist worked with him: so she asked him to show her two fingers, he did; then she said, “Wiggle your fingers like this” and showed him what to do, and he did; and then she asked him to write his name, and he wrote “Momma” and then looked at it and shook his head and threw his head back a bit, sort of like, “What?! That doesn’t say ‘Wayne’.” And then wrote “MAYNE”. So, just one transposed letter, which kids do all the time with “N”s and “S”s and “E”s… that’s what I think anyway… And he got four letters right! The rehab resident/doctor said Wayne would be in Acute Inpatient Rehab for 4 – 6 weeks and then he would come home with me (which was a bit of a surprise—I didn’t think he’d come home or be ‘discharged’ so soon)! I’ve been told that it would be likely that Wayne would need 24 hour supervision at that point and would go to 2 – 4 hours of outpatient therapy a day once home. Some rare cases don’t need 24 hour supervision when they initially come home. I believe Wayne will be in that category—leaps and bounds, Wayne… leaps and bounds!!

Coca-Cola always does the trick

Monday, April 21st: from Julie
Wayne and I went for a stroll today while I pushed him in his wheelchair. We took the elevator up to the 9th floor to the ICU Waiting Room where I sat with Morgan and so many family members and great friends during the first week of his recovery. On the way there, we passed a Coca-Cola vending machine and as we passed it, he tried to grab it and pull himself back to it. I backed him up to it and he pushed the buttons and I said, “You’re not swallowing yet. I wish so badly that I could give you a cola to drink, Wayne, but you have to swallow first.”
Morgan is doing really well. She will be 6 weeks tomorrow. Wayne holds her everyday and just looks at her in wonder, as any parent looks at their newborn. He helps me Velcro her diapers, pull up her pants and her socks, and zip up her ‘sleepers’. She is such a good and sweet baby—her patient and mellow demeanor fit into our lives straight away, but now it’s even more of a blessing since her and I are being stretched to our limits to support and help heal her daddy and my best friend and husband.

Graves' Disease is grave!

April 18
Wayne has been diagnosed with Graves’ Disease. This is the direct link to the stroke. He has started therapy and is doing well, but tires easily. He still needs a lot of rest to keep his strength up for therapy.

Even Harder to say Good Bye

April 17
Andrea and Pop return to New Zealand.

Exchange of Family

April 15
Beth returns to Minnesota, Anita returns back to Seattle.

Roll of the Eyes

April 14
The last 2 days have been great with glimmers of Wayne's personality and humor coming through. He has rolled his eyes at Julie, continues to smile and attempt to laugh with us. He holds Morgan most of the time and strokes her head and even tried to put her pacifier back
in her mouth. He failed the swallow study, which in turn means that he will get a permanent feeding tube that goes directly into his stomach (a PEG tube).This will be good in some respects because he can get the tube out of his nose and it will prevent him from getting food into his lungs which could cause an infection. It will be done under local anesthesia. I am not sure if speech therapy will reevaluate his swallow one more time before this is done or not.
A question that we will ask today. Progress continues to be good and we look forward to seeing how he does with PT and OT today. The next few days will determine where he will go, intensive rehab therapy, or a skilled nursing home where he would have time to gain strength and heal until he is ready for more intensive therapies.

Hard to say Good-bye

April 10
Carleen & Craig return to New Zealand.

Step-by-Step

April 7
It sounds like Wayne is doing better. The swelling is going down and he's trying to express himself more. Doctors have encouraged Julie to speak to him and explain what has happened. They are also hoping to move him out of ICU in the next day or two. It's great to hear

Family Support

April 3
Julie's Family - Merrill, Beth, Ken & Elsa arrive from Minnesota.
Wayne's Family - Andrea, Pop, Carleen & Craig arrive from New Zealand.
After he had the surgery last night there was a lot of edema and some tissue damage. Danyelle and I are heading to the airport now to pick up Julie’s family. Wayne’s family flying in tonight at 6:00. Julie would still like anyone and everyone to come to the hospital. Wayne is now on the 9th floor in ICU. We can meet there for a while. If there are too many people to fit in the room there then we’ll head back down to the cafeteria.

Craniotomy

April 2
Wayne is being moved to Harborview now. His brain is swelling and they will need to remove a portion of the skull to relieve the pressure. Julie has said everyone is welcome to come and support them. Dave and I will be heading over there in a few hours.

April 1, 2008: Julie's Mom, Anita, arrives from Minnesota

April 1, 2008Julie's Mom, Anita, arrives from Minnesota.
Wayne suffered a stroke at home around 5pm. Julie's mother, Anita, had just arrived 3 hours earlier to visit her new granddaughter. Thankfully, having both Julie and Anita present was crucial in acting quickly for Wayne's care.