Sunday, June 28, 2009
The hospital on the other hand hinders that wanderlust. Between the tubes, the breezy hospital gown, the various treatments and requisite visits by nurses and aids mobility in the hospital is difficult, at best. But we still try and get Marty at least up and out of bed for a period of time each day. Since they now lo-jack all of the patients getting off the floor is just out of the questions.
Today I got Marty out of bed and in her chair for about three hours. We saw a really cute therapy dog, a King George sumpin sumpin sumpin. Young, well-trained, cute -- just like me.
After Marty got over the "this chair is really cold in this no back gown" reaction we tried to play a couple of computer games (Strike a Match has always been a favorite). We didn't do very well in the games because we kept getting interrupted. We then began singing (yes we sing -- the term sing is relative and we sing) quietly. When we both got stuck on "If I Love You", from Carousel, I found it on You Tube and we listened to a bunch of songs, mostly from Les Miserables. This is absolutely one of the most stirring musicals I have ever seen, the songs still make the hair on the back of my neck stand on end.
I watch Marty as she listens to stuff like that and kind of wonder what she is thinking as she listens. Marty has always loved music and still does. You can actually see it when she listens and when she sings very quietly to herself. She completely focuses on the sound and becomes almost transfixed to any video of the performers.
She is completely focused when she plays the piano. Marty is still a talented musician and music is still a part of her soul. It always amazes me to watch this woman, who has been so damaged, take her right hand and play, almost any piece. She is, of course, better with music she is familiar with, but she can still play anything given the time. How she manages to translate the notes on the page to the keys on the piano is a beyond me, but she does, and she really enjoys it. When Erin pushed Marty up to the piano for the first time after her stroke; that's when her recovery really started.
So, aside from a little boredom all is okay here at Providence. Marty's white count is down, her sodium is up, her blood pressure stable, but her feet kind of itch. Today we used a little music to scratch that itch -- it helped.
Saturday, June 27, 2009
When last we left you Marty and her gang had galloped off into the West, happy to have identified and incarcerated the bug wearing the black hat using some very powerful antibiotics. Apparently the bad guys escaped the hoosgow as it's baaaack.
Marty isn't real sick, yet. We are trying to be very aggressive and stave off a really bad spell. We believe we have the right medicine, we apparently need to give it to her a little bit longer than last time and hopefully we can kill this pseudomonas aeruginosa, again.
The plan, today, is to give her antibiotics for a couple of days and then maybe have a peripherally inserted central catheter (picc line) inserted to give Marty the IV antibiotics home. It's the only way I could get her to agree to come, she really doesn't like it here and she is getting pretty verbal about it.
Providence is a pretty good hospital, though the main parts have become a bit dated, compared to newer hospitals. If you can get in the East wing you are in the good stuff. Everywhere else is okay, but not as nice. This time we originally were on the East wing, bigger rooms, nicer rooms; but they use wireless telemetry there and they needed the room for a cardiac patient, so we moved to 3rd floor south. Been there done that. You would think we could get like frequent user upgrades but no so.
By the way -- how about another shameless plug for the good and wise Dr. Martindale. This is a very busy Family Practice Doctor who always has time to see you. This is the Doctor who says, no problem, I'll meet you at the hospital on Saturday so you don't have to go to the Emergency Room. This is the Doctor who makes my wife smile when she sees him, because she knows how lucky we are. This Doctor and his staff are what is right with the health care system. We need more of him.
So, here we are again. Today I feel like we have everything under control. But that is today. I have a great deal of respect for bacteria and what infection can do to a human body, I have seen it. I know how bacteria can change and come back. All of that stuff is very real. But, today, we are on the right path to clear this up and that's a good thing.
Tuesday, June 23, 2009
Sunday, June 21, 2009
My Dad is the embodiment of a Father. Constant, consistent, loyal, a coach, a teacher, a remarkable role model. He taught all of us to work and to work hard because that's what we saw him do. He taught all of us a sense of morality, fair play and honesty just by exhibiting that behavior, always. He taught us about faith, about our church, about being active, just by doing those things. I've know my Dad 55 years, and while I have seen him angry from time-to-time I've never seen him out of control, I've never heard the man curse. Oh, sure, we would occasionally get a "Dad Gumit", or "Darn It", but never the really good, juicy stuff.
My Father was my pack leader in cub scouts, my baseball coach in Little League and my biggest fan in football. He made me take Calculus in high school, he taught me the value of money, he took me to the Grand Canyon and he taught me to fish (sorry that didn't take very well). He gave up a year of his life with his family to allow me to finish my senior year in Colorado City when he was transferred to Fort Worth and then he travelled from Fort Worth every Friday, regardless of where we were playing, to watch a pretty bad football team.
My Dad is 80 and is still a remarkable role model. He is what we all want to become in retirement. He is busy, he is active, he enjoys remarkable health, he plays golf and still mows his own lawn. He walks every day and is sort of a force of nature.
Years ago, in Hillsboro when I was a member of the Lion's club I overheard a couple of older gentlemen talking. My preacher walked by and one of the guys said to his partner, "That's a really good man". I thought at the time this was the epitome of a complement from old men, a wonderful testament to a good life. It was the perfect description of what I think we all strive to be. It really describes my old man. He's my Father, my Dad, I love him and he is a really good man.
Tuesday, June 16, 2009
It's a bit ironic that we came home, June 17. One June 18, 2006 we came home after Marty's second stroke. She had been in one of three hospitals, a rehab unit, or a sub-acute care facility for over six months. She had seen countless doctors, nurses, therapists and other care givers and on June 18, we came home. It was also in June we came home after Marty's first stroke, again, following multiple doctors, hospitals and surgeries. June apparently is our homecoming month, I'll take it. Coming home after all those days, weeks and months always feels good.
As I think back on those early days of Marty's recovery I realize how much we have all grown, how much we have all learned and how much we have all changed. If I knew then, what I know now ..... I would have done some things different, but not too many. One of the best decisions I made was to find some really great caregivers to become a part of our family. They make life livable for all of us both at home or the hospital. Marty and I had to kiss a lot of frogs to find Renae, Nikkie and Erica, but all the frog kissin' was worth it, they taste like chicken anyway.
One of the things I have realized is that in the time since Marty's first stroke I don't think she has spent the night alone, without someone in the room with her, not one night. Our children have been amazing in their willingness to take an active role in caring for and helping their Mom. Both Matt and Erin, at one time or another, spent the night in the hospital or at St. Catherine's (sub acute care unit), sleeping on a really crappy sleeper chair. Both Matt and Erin have spent sleepless nights in emergency rooms waiting for results of surgeries or just simple tests, and not one time have they complained. I can't even imagine how difficult it must have been for them to do that.
And they still do it. When I do leave, one of the kids is always with Marty. As good as our caregivers are, she is never without family around her. Oh, I may go somewhere for most of the day, but when it's night time, when it's time for her to go to bed, one of has been able to be here for her. We are very lucky that we can do that, I am very lucky I have had the support of my children and my family. I really think Marty is proud of how Matt and Erin have responded to this situation. I know it's meaningful for Marty to know how much she is loved.
Sunday, June 14, 2009
Marty is doing well. We got her out of bed after lunch and she sat in a chair for a couple of hours while we played cards. She still likes blackjack. If I could figure out how to get her to Vegas ...naw...... that would be a really bad idea. She could get in real trouble there. But, it does reminds me of a time when we were in Vegas several years ago and she was playing blackjack. Marty always liked to get to know the dealers and she always would strike up a conversation with them. If they didn't like to talk -- she would move on to someone else. I can't remember the exact circumstances but one dealer looked at her and said, "do you want another card little lady?" Well Marty had recently completed her doctorate and she looked at the guy and said, "that's doctor little lady to you". Her called her Doctor Little Lady the rest of the night.
Big Segue --- What is right about health care today? My wife's care. We have had such great success with Providence Hospital, the nurses, the CNAs and the Respiratory Techs. They are consistent, kind and treat Marty like a person, which is a real gift for someone that has to be in the hospital from time to time. And then of course there is Marty's doctor who epitomizes what a Doctor should be. He really is concerned about what is best for Marty and his whole focus is how do we keep her well enough to do things she likes to do. His ethic permeates his entire staff, and all of them from the nurses to the front office people are nothing but helpful and kind. You should all hope for the same health care experience.
We should be here for a few more days simply to take the full cycle of the antibiotic. I hate being here, but I hate coming back more, so we stay, take the medicine and try and figure out a way to get Marty out of the room from time to time. I'm hoping we get sprung in time to make it to the lake for a few days at the end of this week, but, remember the day-to-day thing and we will see when we see. And if you are just simply enraptured by this blog and have to read every word, you will want us out to so I don't have quite so much time on my hand. Yeah to Providence for finally getting wireless.
Saturday, June 13, 2009
Marty awoke in pretty good spirits yesterday. She had not slept great during the night, but par for the course. Soon after dressing, she got sick to her stomach and vomited. Now, throwing up is a drag for everyone involved. We are all familiar with the old adage, don't make me smell it or I'll throw up too. It's just gross, for everyone. What compounds this nasty stuff for Marty is the danger of aspiration, causing pneumonia. It's also a sign for Marty. A sign that almost always indicates an underlying illness.
The hard part is making a decision what to do. For us, there are really three options: do nothing (yeah right, way too much anxiety involved), go see her family practice Doc, Tim Martindale (yes they will see us within an hour), or go to the emergency room (expensive and just too many sick people). I really hate making this decision. All of the options suck in their own way.
We chose ER simply because this is the best way to get the most information, the fastest. But, you have to wait longer, you have to hang with sick people and it takes longer (did I say that twice). Actually, we got in very quickly. Visits with nurses, billing, and doctor were done and then x-rays and blood tests followed. Dr. Pepper, not a drink but the ER Doc, consulted with Dr. Martindale and came in to say, basically everything was okey dokey........... except Marty's white count had gone from 12,000 to 16,000 in the last week (10,000 is normal, anything above generally indicates an infection of some sort)all the while being on an antibiotic called Cefdinir, which has worked well in the past.
Wednesday, June 10, 2009
We did take Marty to the dentist this afternoon. I hate going to the dentist myself, so just double that for taking your invalid wife. Marty has recently had some pretty substantial dental work done and had her bridge replaced. Now here is an interesting fact. I have been married to this woman for 32 years and have known her for longer than that. We have talked about virtually everything a married couple can talk about, we have seen each other at our best and our worst, and I didn't know she had a bridge until two years ago. It wasn't until I took her to the dentist the first time and the dentist asked me when she had the bridge put in place and I said -- good question. You think you know everything but sometimes you just don't know what questions to ask.
This evening we went to one of Obama's Organizing for America's health care meetings. There were about 20 people there and they wanted us to relate our health care stories to them. A local Pediatrician led the session and broke everyone into groups to talk about their experiences. We were supposed to steer away from policy and just talk about our issues. You just don't know how hard that was for me. Since I'm retired I always have an opinion, a solution and time to tell you about it. Aren't you lucky.
So we get to the sharing part and I get up to give my testimony, my story. I talk a bit about our history and how difficult it was to find personal insurance. I made the comment I was apparently too short for insurance, or at least too short for my weight. Everyone thought this was pretty funny, even Marty who said in a loud conversational tone, "Bless his heart", which of course brought further laughter. Then others started to share and after about five minutes at that same volume, Marty looks at her caregiver, Renae, completely bypasses me, and says, "would you take me to get a Diet Coke", which Renae did. Marty has never suffered pontification gently. She still doesn't.
While going through a thorough introspective review of self (I thought about this for a few minutes, I'm way too shallow to spend to much time on introspection) I think I know where I went wrong and whose fault it is. Because in any situation you must know who is at fault, certainly I can blame someone for this. How typically liberal can you get?
I really think there are three groups and one event I can blame: my wife Marty, my minister Jimmie and my parents Bettye and Larry. Everyone, especially Mom and Dad please groan in unison.
Let's start in reverse order. Larry and Bettye first. They taught me liberalism from a very early age. I know this pains them from time to time, being the staunch Bill O'Reilly, Republican folks that they are. My parents have always taught me tolerance. They took me to church every Sunday where I was taught to "love my neighbor". They taught me to think for myself, to care for others and to care about how our actions impact others. The encouraged me to give of myself to others and to look out for the least of us. My Mother always reminded me to think about how the other guy felt. The led me to understand that differences of color or thought did not mean either was superior or inferior, just different. Sorry guys but you raised me this way. It really is your fault.
Jimmie J, my pastor, my friend, showed me that the difference between doubt and faith was very slight. He and my church made it okay to think differently. They made it okay to be a Presbyterian in a very Baptist state and city. Mostly, by listening to Jimmie, he gave me the confidence to be able to say what I was thinking. I listened to and watched Jimmie and our church grow as I grew myself. Jimmie never rails about anything, but he talks constantly of God's love for ALL of us and he reminds us that we are loved by the one who knows us the best. If you listen to JJ very long you understand that we are all our brother's keeper. See, it's just not my fault. It's the people who keep talking around me.
My wife, my bride. We did a brief yes or no session the other day to establish her liberal street cred. She is against abortion, for gun control, against capital punishment, and really against the war in Iraq. Three out of four and she voted for the President, she qualifies as a bad influence. Marty was really bothered by the war and the reasons given for the war. She was unabashedly anti-Iraq war and she explained that to anyone who would listen. Marty was and is vocal and sure about what she believes. I still marvel at the way my wife engages and tries to advocate for herself and others. She makes me want to stand for something important.
Last, my ex-job. For years I worked in a very typical work environment. An environment that prized agreement with long standing business principles. An environment that did not really encourage diversity of thought. I bought the principles and espoused the principles like a good soldier. I contributed to the PAC because it was pragmatic to do so. I generally kept my mouth shut about politics. I protected my check by protecting my company.
But then TXU and I got a divorce and I stepped out of the liberal closet and took a deep breath and filled my lungs with liberal, progressive air and I felt released to say what I had been taught and to say it loud as Marty does. For me it was a new level of freedom. For those around me it apparently is a bit aggravating. So sorry.
So my introspection is done for the day. I have concluded all of this is really not my fault, I'm just doing what I've been taught and what my role models showed me. Just like the good little leftist I am --it really is someone elses fault. So when Sean, Bill, Ann and others talk about the idiot liberals, guess their talking about me --- ooops....
Sunday, June 7, 2009
One of the things I discovered early is that many health care providers, unless they had a previous relationship with the patient, pretty soon go into an almost automatic response mode. It's another sick person. I don't mean this as disparaging as it sounds. It's just a reality. These wonderful providers work with hundreds of people and take blood pressure or draw blood or start IVs constantly. They literally see hundreds of sick and injured and it is asking the impossible for them to not go into a somewhat automatic treatment mode. That's why everyone needs a family advocate. They need someone to bring donuts to the nurses station (best advise you ever gave me LB).
Marty had always been incredibly gregarious; befriending servers, clerks and medical personnel everywhere. She was quick witted and funny and more often than not would make great friends with everyone, including the clerks at our local convenience store. She would have known to bring sweets.
I wanted to be that person for Marty. I wanted to make her a very real person to all of her care providers. I tried to become Marty's voice in all of the hospitals and medical facilities we visited. I really wanted people to know more about my wife than she was a very young stroke patient. I wanted the care providers to see her as the very interesting, bright, talented person she had been. I still want that. I still want people to know who Marty was before she got sick.
I told everyone how smart Marty was. I told them about her education, about being a Speech Pathologist and a practicing Psychologist. I told them about her work with academic physicians and her friendships with and her understandings of the difficulties in the health care industry. I told them about our children and how important they were to Marty. I told them about how musically talented she was, that she could play multiple musical instruments and how much she loved music. I told them about Marty's parents, Arty and Jean, and how her father at one time had been a meat packer so don't be surprised at what Marty might say, because she can cuss.
While I learned about Marty's medical problems and a lot of what all of this meant to us as a family I made it my priority, my job to let people know her. Everyone needs this. We all need to be able to attach a real, human face to others. In order to do this you have to know some of the personal stuff about them, not just see them naked. (You can quote me on this). In doing this I made a lot of friends, people who genuinely wanted to know more about this rather fascinating patient. It was amazing seeing how this really sick woman could still touch so many lives.
It's really important that sick people have the kind of support Marty has received; from her family, her friends and care providers. Nurses, doctors, therapists just simply don't have the band-width to do it all, the rest must fall to the people who love you. Marty is lucky in that sense. She raised and taught her family, including me, that you must stand by your family in the worst situations. She was right.
Wednesday, June 3, 2009
One afternoon Marty and I snuck off alone to the National Cathedral, which is little off the main paths of D.C.. We took a cab and walked through this enormous sanctuary.
Marty, as she was prone to do, was completely captured by the structure, by the architecture, by the sense of history and enormity of the church. I, on the other hand, was focused on what was next. How would we get back to the hotel, there were no cabs, when would we go to make it back in time for dinner, how would we get everyone to dinner, all of the logistical issues that become an obsession for some of us anxious travelers.
Marty very quickly tuned in to my anxiety and my lack of attention to the beauty surrounding us. She got mad and launched into her "live in the moment speech", and how can you ignore the magnificence around us and not "be here, right now". It was something of a seminal moment for me as I realized how often I was too busy looking down the road for the next turn instead of seeing what was right in front of me. When you focus too far ahead you not only miss the curves right in front of you (this is bad for your car insurance) or you miss the thrill of driving the curves.
This whole Jerry Jeff Walker, "livin' life day-to-day" thing has never really been me. While not a detailed planner, I have always liked to know what was coming and wanted to be prepared for almost any contingency. In another life I think I could have been a survivalist, you know, stock up on tuna, water and toilet paper. My kids already think I do this.
I ramble on with this history to make a couple of points, that really, I really will get to in the next few sentences. Hang in there.
When Marty and I first came home after the second stroke I was still very much in the "what is going to happen next" mentality and I was constantly trying to prepare for it. I was looking for her to get sick, I was waiting for the end, I was almost wanting it to end. I kept thinking of the worst situations and looking for the worst situations, consequently that's where I lived, in the worst situations. Because I focused on the future and what might be I was constantly living Marty's death and it was awful.
Somewhere along the way I began to hear Marty's voice, "live in the moment". I don't know that it was a conscience decision or an evolution of thought, and I certainly don't stay "in the moment" very well, but I have gotten better at it. I began to really rejoice in the moments of peace with Marty. When we are sitting on the patio and hear the wind chimes I really listen. Marty says she hears her Dad talking to her in the wind chimes, I listen for that too. I wallow in the small bursts of conversation Marty and I have and I look for ways to enjoy my time with her.
I really try not to focus on the end game anymore. I don't know how, when or even if I will ever see that anymore. I have really tried to quit living Marty's death; instead, I try to enjoy our life in the new normal we have. It all sounds really sweet, it's all very hard for me to do, because I'm not really built that way, but when I do, when I am able to "live in the moment" and not live what may or may not come in the future..... this is not just a tolerable life, but a rich one.
Monday, June 1, 2009
Certainly these touchstones can be heart stopping moments: A missed accident, a real accident, a death, a moment when you realize a relationship is done. Some of mine are like this. I can still remember very clearly seeing Marty when she had her second stroke. I clearly remember her slumped over and the left side of her face slack without any muscle control. I immediately knew what was happening and I still remember virtually every detail of those minutes. I still flash to those memories every time Marty moves in a way that reminds me of that event.
Most of my touchstones are events that are moving and positive moments. They may seem silly to some, but to me they represent my life and the emotional connection I have with life. I remember clearly Matt in the 8th grade band playing their last concert before they moved on to high school. Matt played trumpet at the time and they were playing in the high school gym and they played one of the pieces from Dances with Wolves. Matt did not have a solo and I had heard the music several times over the years, but somehow, this time it really struck me how moving the piece was and what a privilege it was to listen to my son help make the music. I have no idea why it struck me but it did.
Then there was the time when we went skiing in Angel Fire, New Mexico with the Patricks. Just as clearly as if it were yesterday I remember standing at the top of one of the slopes as I watched Matt, Erin, David, Andrew and Elizabeth charge down the white slope of snow. It was cold, the sky was the ice blue you can only see at 10,000 feet, and the wind was cold on your face. I watched the kids slide down the slope effortlessly and I knew, I knew this was one of those moments that you want to remember when all things seem really right, when everything seems in rhythm, when you can forget everything around you but this one moment and relish it.
Certainly Marty has provided some touchstone moments. After her first stroke, after time in ICU, after a couple of surgeries we finally made it to comprehensive rehab at Hillcrest Hospital in Waco. When we got there Marty could not stand independently, she had absolutely no stamina and just wanted to sleep. She started rehab and like most things Marty has done in her life she did it with no obvious fear. She made steady progress until one day I walked in to the rehab gym and there she was, with her PT, "Froggie" (I can't remember why we called her Froggie, but she certainly didn't look Froggie). They were standing atop of the set of up and down stairs they used for stair climbing practice. Froggie had a good grip on Marty and when Marty saw me walk in she broke in to the "John Travolta, Saturday Night Fever" pose with her right arm sticking up and wiggling her bottom. It was jarring, it was pure Marty, it was a moment I will never forget.
All of this is to say I had another one of the epiphany moments this week at the lake. Marty and I both love coming to the lake. Marty really seems to be at peace and I know I am. Yesterday we were sitting on the dock in the bay (it's a song) listening to the tide roll away. In this case we were sitting listening to the water, we had a hook in the water, Marty was watching the fishing pole intently, the wind was blowing slightly, the clouds were moving across the blue sky, and it all seemed to come together to make a moment, a moment I will remember, a moment that said being here, right now is just right.
I plan on having more of these moments with Marty, with my children, my coming grandchild (Larry-Bob, it is a boy), my family and my friends. I want more of those moments that make me who I am, even if they occasionally make me cry. That's okay.