The Plumber and the Contractor

April 30th, evening Sorry I haven't kept as up to date. I find as Ben gets better I tend to stay at Evergreen with him longer. It's hard to leave him.

We went to his doctor, the plumber, on Tuesday. He said his head wasn't good enough to undergo such a long surgery yet- he wants to see him in 3 weeks. But it was cool- the doctor spoke directly to Ben and Ben answered all his questions quite nicely. Tom and I didn't answer hardly anything. We go and see the general contracor- his heart doctor on Monday- Ben will most likely get a stent put in next week and undergo the bypass later down the road.

I've had some difficulties with the nursing home. One was the girlfriend of one of the residents- she yelled and screamed at Ben as if he was a dog. I ended up having to file a written complaint about her and she is kicked out, I guess this isn't the first time, for a week. On Monday I am going to see about having Ben moved over to Mother Josephs, which is affiliated with St. Pete's Hospital. Otherwise I don't think they are going to let him move over to St. Pete's rehab program- I have been met with nothing but resistance by Evergreen and Ben is bored and needing much more therapy. That's why I hate to leave him- I am always doing puzzles etc. with him. When Sherry and George came in tonight, we had him up and walking around the halls.

Ben was thrilled when his mom, who is 93 years old, came in to see him on his birthday. She sat on his lap, he kissed her and hugged her and cried, calling her mama. It was so sweet. Ben's brother Mark drove her the 3 hour trip from her farm on Mayfield Lake. Mark's the same brother who stayed with Ben in Critical Care all night that first night we weren't sure Ben was going to make it.

All in all, things continue to look up. Again, thanks to everyone for remembering Ben's birthday, for all the cards and visits. Love, Barbara
8:23 PM

Happy Birthday Ben

From Barbara: April 25th.

Ben turns 66 today. Somehow it seems sad that he's in a nursing home for his birthday but it sure beats the alternative. Tom and I wheel Ben across the street at 3:30 today for Ben's appointment with the heart surgeon. I am very emotional about this- scared that Ben will have to have the stent, scared if they put him under for the hours needed for a 5-way bypass. He seems so healthy except for his memory problems and learning how to walk etc., it's easy to forget he still has to face the biggest challenge of getting the damage to his heart repaired.

I've been getting a bunch of people asking what Ben might enjoy for his birthday or what to bring if you come to visit him. As far as food- he is still eating his meals ground up- an upgrade from pureed. So anything you bring him must be soft and if he's going to eat it someone must watch him so he doesn't choke. Something like a soft protein bar, or a raw food energy bar would be good. Not too much sugar since he's still getting his blood sugar down from the 'incident'. I'm going to order him a plain cheese pizza with a soft crust for his b-day today.

And I would think this goes without saying- no cigars or brandy! Please- it's probably best not to joke or kid about such things- Ben tends to obsess about it afterwards and he's tried to escape to smoke. He tries to bum smokes off the other patients- I am afraid someone's going to give him one. As far as I know, Ben will never be able to smoke or drink again because of his heart and he will most likely be on anti-seizure medication the rest of his life. So please, don't tease or tempt him. (Someone actually brought him a cigar yesterday!)

As far as what to bring him at the nursing home- Cappy got him an adult coloring book he's crazy about. Maybe some children puzzle books. He's into Egyptian and Native American and architecture and art books. If anyone has an old game-boy with Tetrus on it he'd probably flip. Maybe a fanny-pack for him to carry his stuff in wheelchair. Anyhoo- that's all for now. Again, thanks for everyone's support and help through this. We couldn't do it without you.
10:14 AM

Birthday Boy - April 25th

From Jane:

Ben's Birthday is coming this next week - April 25th - I know he would really appreciate everyone's cards!

Cheshire Cat

Tuesday night- All in all it was a great day for Ben. He had many wonderful visitors today. And the cool thing was he was up and walking with his physical therapist- without his walker! He went up and down the halls of Evergreen, grinning like a Cheshire cat. The staff people and residents at Evergreen are intrigued with who in the heck is this guy? (Some of them still ask me 'who was this guy?' I have to remind them that he's still an is, not a was) He's had so many visitors and support, they are blown away. The nurses like to hang out in his room because it's fixed up so nice. Many of them have told me they've never had anyone in there who has gotten so many cards etc. Thanks everyone for all your support and love- I really believe that's what's helping both of us get throught this.

I just got back from the St. Pete's women's health series at the Washington Performing Arts tonight- the topic was women and stress- my friends and I bought the tickets months ago so I knew I couldn't wimp out on them and not show up because I was too stressed. I am glad I went- the message was take care of yourself FIRST. It's hard, because I've been so focused on Ben, but this week everyday I'm trying to do something for ME. Today I went to see my own doctor. Before this happened I was on 2 medications- today I am on 8, but I know that's just for now. So I'm going to say goodnight and take care of myself. Thanks again. Honestly, I feel blessed, not stressed. Each day I get to see Ben, my favorite person in the world, it's a gift. Love, B

Movie Time

Spent a lovely afternoon at Evergreen Transitional Rehab with Ben. We watched an old Jodie Foster, Helen Hayes and DAvid Niven movie, Candleshoe in the activities room of Ben's interem home. Sometimes Ben can be quite lucid, but today he was discovering that he's 'lost his memory' I keep telling that no, he's re-gaining his memory. Today he was sure that most of the people there worked for us at our realty company. Now, this may have been true, but I doubt it. He kept thinking we were running a meeting. Luckily we weren't.

Ben recognizes friends and family visitors and photos and then he gets confused after a bit. But he's eating well and today he was reading the Olympian and a book about George Burns which of course has sparked some interst in cigars. He wanted me to call the Olympian and tell them an idea for a story about the propsoed golf course coming in.

For those of you that have asked, he doesn't have a phone in his room you can call Ben. They have a cordless phone they can bring to him- they ask to not call during meals- 8, 11:45 and 4:30. Sometimes Ben's conversations are quite lucid and come to a reasonable end. Sometimes the conversations are frustrating for Ben as he tries to communicate something and he can't. Those conversations are difficult to end because Ben can't hang up. So, bearing that in mind, Ben can be reached at 360-491-0941. His address is Evergreen Nursing and Rehab Room 406, 430 Lilley Rd. NE, Olympia 98506.

Again- thanks to all the well-wishers who have visited Ben. Even if he was asleep, we appreciate it. And thanks for all your help, love and support. Love, B

As Good As It Gets

Monday- Ben continues to improve, but I'm noticing we are both becoming like Jack Nicholson in Good As It Gets, obsessively compulsive about the strangest things. Right now, for Ben, it's his wheelchair which he's still struggling to dismantle. Luckily, it's pretty well put together and there's no chance he can take it apart. Me, I obsessively make sure sure I lock the doors at night, so much so that I find my self coming downstairs repeatedly just to make sure, over and over. Next I'll start buying cases of Nutragena soap.

Each day it's something new. Today Ben was on a 'duplicating' kick- at first he wanted to 'duplicate' me. (Oh how I wish he could- I'd love to be two places at once right now). Then he found a piece of some electronic equipment they'd left in his room and he was trying to use it to 'duplicate' his photos that I've brought from home. He's so funny, he makes everyone, even the most somber staff people, laugh. And he seems fairly content in his little world, although, of course, he gets frustrated and confused. I hate to leave him there- but he's safe and getting the attention he needs. Can't wait till he can come home. Today I actually got some of his Medicare paperwork done and delivered so that felt good.

Again, thanks for all the cards etc. We really appreciate your love and support buoying us up through this incredible journey. Please pass this on to Ben's friends. Oh, and all of you that think this is an example of my writing- no way- this is an example of what I call 'vomiting on the page', just getting it out. When I write write, I actually go back and edit and even spell-check. Love, Barbara

A Day for Tears

Saturday afternoon- I came home because they had just sedated Ben when I got there he's at the point where he gets confused, I wasn't there, he didn't understand where he was etc. I guess it's part of the process, but it's still hard. This is a day for tears- I haven't cried in a while so that's probably good.

I'm still trying to get the email list together- please keep passing this on to Ben's friends- this is one of three lists that I send out- hotmail will only let me send it in batches of 50 addresses. Again thanks- especially to the folks who have visited my husband. Love, B

Still Progressing

Friday late afternoon- Ben's continuing to make progress- hopefully he will be able to be transfered back over to St Pete's to their rehab unit soon which is where we really want him to go- it's a MUCH more intensive program and the caliber of staff is unbelievable. It's real important that Ben's brain injury has improved enough that they can do the by-pass in 4 weeks.

But in the meantime, he's still in room 406 at Evergreen Transitional Care Unit. Parking can be tough. I use the entrance that says Transitional Care with a 400 over the door. You'll pass by Ben's room (It says Benjamin which isn't his legal name- Ben is!). If Ben's not there, ask a staff person in the hall where he might be. It try not to disturb him while he's doing rehab because he's easily distracted but sometimes you can wait with him in the gym, which is straight ahead when you come through the entrance. They eat at 8, 11:30, 4:45-ish. You can sit with him in the Garden Room and make sure he doesn't fall asleep between bites. If you wheel him around in his wheelchair, it works best to have someone hold his hands as you go through the halls- he tends to want to hold on to the walls- and believe me, he's strong.

We appreciate your support- Ben loves having visitors. Although he tends to get lost in time- today when they asked him what he did before coming to the nursing home, he said he worked in the woods and he was a logger- which was true, only 45-50 years ago. Ah well. Last week he was telling people he was born in Egypt and he was an engineer on the Panama Canal. Love, B

Evergreen 406

Thursday afternoon- Ben's settled into Evergreen Nursing and Rehab right behind the old Memorial Clinic- he's in room 406 and he LOVES visitors. He continues to make progresses each day- he is truly like watching a miracle unfold right before my eyes. He was a riot when they moved him from St. Pete's yesterday on this tiny gurney with 2 tall hot babes who drove him across the street in the ambulance- he was ecstatic with his new digs- just as thrilled as if it were the Ritz-Carleton.

He's working with the three physical therapies and making progress in every area- it's slow but steady uphill- and this is the first time he's been off the sedation. Yippee! So his moments of clarity are a bit longer and more lucid. He still falls asleep when you're talking to him, but they say that each time he does that his brain is repaying itself.

Yesterday after being in his wheelchair (for the first time ever in is life) he had figured out how to take the feet dealy-boppers off and put then back on (I still can't figure it out), he'd figured out the brake system, he'd unfastened the belt around his waist (I couldn't figure that it out either!), he was figuring out how to push himself around with his hands and feet and pulling on tables etc. and generally giving the caregivers at the nursing home a run for their money.

Of course, ever the social-lite, he's already made friends with a couple of the residents there. His long term memory is improving every day- I went through all the cards that had been sent to him and he recognized every friend so that was good and I told him all the people who had been up to see him and he was deeply touched. It's hard to say if his short term memory is improving or not- time will tell. When I brought Bones, our dog, into see him yesterday he said "Bonesy-Pie.' He had Bones pulling him around the hall in his wheelchair which was a bit distressing when the resident cat Murphy chased us down the hall and swatted poor Bones in the face! You can take your pets to visit- you just have to have proof of current rabies shots. Visiting hours are totally open- it's not like the hospital or like it will be as soon as he's strong enough to be transferred across the street to St. Pete's rehab which is much more structured. So all in all, this is an upgrade- we're talking it one day at a time and Ben's absolutely a ray of hope and sunshine.

Thanks to all you wonderful people who showed up to help me on Sunday. Thanks for all the calls, emails, notes, flowers, stuffed animals, even gummi boobs! We couldn't ask for better friends and we both feel your love and support. Love, B

Still Waiting

Still waiting to hear where Ben will be transfered- in the meantime go visit him in room 902

Pacemaker Tweaks

Friday night- Ben's surgery went fine- he's still sleeping which is where I am heading. How about stopping by this sunday at noon to one-ish if you can spare some time to help me move stuff around and prepare for Ben's and my new life? Thanks- please pass it along- Barbara

Ben goes back for surgery this aftenoon- his pacemaker isn't properly working. Love, B

Transferring

Thursday afternoon- Even more great news today- we'll know for sure tomorrow- Ben's doing so fantastic they are talking about transferring him to St. Pete's own rehab facility- it's a separate building but attached to the hospital- the average stay is 10 days! The other places would have been for him to stay for months so this was never an option before. At first they were talking about Ben never coming home, then a minimum of 6 months up north in rehab- now they're talking a short time less than 5 miles away! Yippee!

When he comes home, he'll have occupational, physical and speach therapists come to the house every week. The only down side is he'll have to be 'supervised' 24/7. So if anyone could help me 'supervise' Ben (ha,ha) that's what I'm going to need help with so I can get a break and go to the store etc. So life continues to look up around here for us.

Ben is so funny- he's got even the most somber and stoic nurses cracking up. He's amazing. Keep those prayers and that positive healing energy coming our way- it's really working- his doctors are still blown away by his progress. Oh yeah- does anyone have a used laptop they want to sell or I could borrow for a couple of months? I was thinking I could finish writing my book on my lap while I'm 'supervising' Ben.

That's all for now. Love, B

Defib Day

Wednesday nite- short and sweet- Ben's got his new pacemaker/difibulator installed and he slept all day. I'm bushed and too tired to drive myself in to see him tonight now that he's woken up- but he just called me and I got to talk to him on the phone! Way cool!

Tomorrow they are supposed to boot his lazy ass out of St. Pete's and get him into the nursing home- hopefully Mo Jo's next door. The nurse asked me today if I was going to drive him over. Yeah, right. Can't wait till he's in the skilled nurse facility because I can decorate his room and bring Bones into see him- poor Bonesy is so sad without Ben. The cat seems to be handling it better than the dog. Goodnight all. Love, B

Heart Matters

Tuesday Night- This was a tough long day. They ran that camera on a catheter deal up Ben's main artery in his groin and discovered a bunch of blockage in his heart. Still not sure if the artery blockage was the cause of the his heart stopping- but his 4 heart doctors tend to think not because none of his arteries are completely blocked. The blockage could be caused by the 'event'. So far it's inconclusive. The detective in me wants to know what happened. Ah, the trappings of the premise for a good mystery.

Tomorrow Ben goes to surgery and will get a zapper deal screwed to the muscle of his heart. As soon as he's neurologically strong enough, probably 6 weeks, Ben will have a 5-way bi-pas, so please please please keep your prayers and good energy coming- especially for the next 6 weeks.

I had a complete melt down in the elevator after Ben's surgery and a kind St Pete's lady took me back to our room and called the chaplain for me. He was just like Spencer Tracy and the amazing thing was he already knew all about our story. He told me to stay in the moment and do one day at a time and enjoy every moment with my sweet husband. And then my sister Jane swooped in like a guardian angel, driving 3 hours from Burlington, and she took over where the chaplain took off. By the time she left, Ben had woken from his surgery and the world was looking much brighter. Just the way he smiles at me when he sees me makes me feel so blessed and so fortunate.

Ben ate every bit of his dinner tonight- he's been upgraded from 'honey' consistency to 'nectar' in the swallowing department. Next step- liquid! My darling husband continues to charm everyone. His night nurse resembles Tom's beautiful bride Dawn, and Ben makes google eyes at her. He's so adorable, the nurses keep asking me if he's always this sweet and I tell them yes, he's always sweet to me. (In the 21 years we've lived in this house- I think Ben has yelled at me twice- and both times, believe me, I deserved it!)

So another amazing day. Off to bed. Please pass this on to anyone who you don't see on the list. Love, B

False Alarm

Monday night- I just got back from hospital and found out they already tested Ben for toxins- including bacteria which would be all food poisening etc. and anything toxic that he ingested or inhaled like mold. But keep those ideas coming.
Too tired to write anymore- I'm turning off the phone and going to bed.

Ben's doing great. 3 nurses dropped in tonight saying they's heard about our amazing story. It's so cool how much hope and excitement our story has brought to not only the nurses and doctors, but to all the people I chatter to as I joyfully ride up and down and up and down and up and down that elevator to see Ben on the 9th floor. Nightie night all!


Monday evening- Ben's sister-in-law Kim, Mark's wife, had a dream last night about Ben having botulism. Kim's a nurse and she looked up the symptoms which can be to stop breathing and even your heart stopping which is what happened to Ben. The only thing I can think of so far that Ben ingested that the workmen and I didn't was alcohol. He had a small glass of wine or whiskey that night and we still have 3 open bottles I could take in for testing. Could someone please google botulism on line and see if there is anything alcoholic that's been recalled- someone told me there is a web-site for such things. I'm going to take the open bottles to the hospital and see what they say.

I'm a Lucky Man

Sunday night- just got back- Ben's finally sleeping. He's made HUGE progress today- even the doctor said so. Everyone is blown away by his progress. His neurologist made me feel good by saying my fast response is what may have saved him. I guess the statistics are grim with this type of loss of oxygen. It's still hard to say- it could be anywhere from 15-20+ minutes. He's truly grateful to be alive- he told me tonight, "You know Barb, I'm a new man." He keeps saying, "Barb, we are so fortunate." and "I'm a lucky man." He knows he has been given a new life and he is totally motivated to get well, completely understanding his situation. Amazing.

This whole experience is like witnessing a miracle unfold on a daily basis. Again, many thanks to everyone who went up to see him, sent flowers, cards etc. We both feel all the love- Ben knows you are rooting for him. Love, B

Welcome Back Barb

Saturday afternoon. Great news! Ben will not have to go into a long-term nursing home- he's doing so flippin' fantastic they are sending him to intensive inpatient rehabilitation so we will most likely being heading north since the rehab down this way specializes in strokes and he has what it classified as a head injury. They have suggested Good Sam's in Puyallup and Evergreen somewhere north. (If you know anything about rehab/head injury, not stroke- please let me know since he'll be moving probablely on Thursday) This was the first day that the nurses and doctors actually said he was doing amazing- he's far exceeded anyone medical's expectations- they said he was so young and healthy and strong that he should go to some kick-ass rehab boot camp.

If you want to visit, go up and see him before Tuesday- that's when he goes under for a couple of days to do some tests and - they changed it from Monday as per my last message. Things to do that are helpful as per his physical therapists: Please sit or stand on his left side- the non-window side- the physical therapists are trying to get him to use both sides of his brain. There are photo albums you can have him look through and ask him who everyone is- try and let him answer for himself. There are some of his favorite picture books- Egyptian and an architectural Digest he adores- look through those with him and see if it strikes any bells. Also see if he can draw or write- I know he can read because he said Welcome Back Barb- I had written Welcome Back Ben on the board in his room. If he's asleep, please let him rest- he's just getting over pneumonia- and if you are sick or just getting over something, best not to visit Ben or me since my immune system is under stress. If the door's closed he may be having physical therapy and you can help- same with when they are feeding him- you can help assist them- it's important that he eat everything so he can get strong again. Helping the phyiscal therapists is like watching a miracle unfold right before your eyes!

Ben's daughter Cheryl is heading back to Louisiana tomorrow- it's been such a gift to have her here. Tom's doing well but ultra-busy. He had to do a presentation for Rotary the day after this all happened- he's won new respect from the business community- he's awesome. I told him to take the day off tomorrow- he hasn't had a break since this happened. Again- thanks so much everyone for your support and for holding us close in your hearts. Ben and I love you all, Barbara