Hunting was good. It seems we have thrown enough shot into the air that we hit something. Marty's white count is down and her sodium is up; both good signs that we have the infection(s) under control.
Marty's arm hurts. We have moved from synthetic morphine to a couple of oral pain relievers and they work well enough and they don’t completely knock her for a loop. The EEG taken Wednesday seems to indicate the seizure Marty had last Sunday was something of an aberration and she does not have ongoing seizure activity. Her neurologist, Dr. S, actually used some bigger words but I can't spell or really remember them all that well. He still thinks Marty needs to be on Keppra, an anti-seizure medication. Based on the trauma from this past seizure, I relent.
Marty appreciates all of the kind words, thoughts and prayers. I read her all of them and she will ask, "Who said that, who wrote that, what did they say?" It feels good to her. It's nice to know people extend themselves to you. About the only other time that happens is when we die and as the dead person you don't really get to see all of that mourning and caring. I think we really should consider doing funerals before we die.
We are hoping to go home either Monday or Tuesday. Then we get to figure out we will need to adjust our daily life to accommodate Marty's broken arm.
I am so grateful we have Nikki, Renae and Erica, it will make the transition easier for both Marty and me. It turns out I'm not really patient, I wish I was, I try to be; I'm just not and the next few weeks will require copious amounts of that which I don't possess. We shall see and we will conquer.
.
Sunday, February 28, 2010
Saturday, February 27, 2010
It's Still Broke
It's Saturday and we are still incarcerated at Providence Health Center. In case you don't know, hospitals are not very restful places and Marty has generally not slept well so she naps a lot. That's okay, hospitals do a lot of other good things, they have really good drugs in hospitals.
Marty's white count has trended upward the last couple of days and she had a bit of a fever yesterday so it doesn't appear it's a good time for us to leave just yet. Besides, we would miss the good company of some very good nurses. I told Nurse Stacy and Great and Wise yesterday we have had the best care of any hospital stay anywhere, to date. The doctor we almost expect, the nurses have been above and beyond the call, just great and I mean it. I suspect they hear this from many, but these guys have been good.
Over the last couple of days we have done an EEG, still waiting results, a modified barium swallow study, swallowing slow but okay, and a chest x-ray, some cloudiness in lower right lobe, but it could just be scarring from previous pneumonias. The two most pressing questions; what did we learn from the EEG and why is her white count creeping up again.
Marty's neurologist, Dr.Schwartzee came today and examined her and said he really felt like she needed to be on anti-seizure meds... Boo. They tend to make Marty really sleepy and a bit loopy and tend cloud some of our more obvious diagnostic tools. Oh well, we will adapt, and I agree Marty needs to be on these meds, I just don't like the side effects. Dr. S will read the EEG, when he finds it. Hopefully he will let us know what it says, probably nothing.
Great and Wise has decided to add another antibiotic to our arsenal to battle the white count which could be coming fron an upper respiratory bug not affected by the other two medicines. She is going off the original antibiotic today and we are adding one that is from a different family. It's a shotgun approach but I say keep shooting. That's the way I always hunted, shoot enough and the bird eventually runs into the shot.
Marty's arm is still broken (duh) and it still hurts so we haven't had a miracle healing yet. It's swollen and bruised and it hurts for her to even try and use it. She moves her hand and her fingers and she held her Diet Coke a bit last night first steps. Marty will work hard to get use out this arm, she hates being fed, yet she allows it until she can do something about it.
I really appreciate all of the kind thoughts being sent Marty’s way. I’m not sure I understand why it makes a difference but it really does, just knowing people are out there caring. I always make sure Marty knows about all of the people following her life and I read her all of your comments. If you have never had a chance to meet Marty, she really is very resilient, smart and very, very, very stubborn; all of which has helped her throughout our adventures and will help her as we move to a new normal.
Marty's white count has trended upward the last couple of days and she had a bit of a fever yesterday so it doesn't appear it's a good time for us to leave just yet. Besides, we would miss the good company of some very good nurses. I told Nurse Stacy and Great and Wise yesterday we have had the best care of any hospital stay anywhere, to date. The doctor we almost expect, the nurses have been above and beyond the call, just great and I mean it. I suspect they hear this from many, but these guys have been good.
Over the last couple of days we have done an EEG, still waiting results, a modified barium swallow study, swallowing slow but okay, and a chest x-ray, some cloudiness in lower right lobe, but it could just be scarring from previous pneumonias. The two most pressing questions; what did we learn from the EEG and why is her white count creeping up again.
Marty's neurologist, Dr.Schwartzee came today and examined her and said he really felt like she needed to be on anti-seizure meds... Boo. They tend to make Marty really sleepy and a bit loopy and tend cloud some of our more obvious diagnostic tools. Oh well, we will adapt, and I agree Marty needs to be on these meds, I just don't like the side effects. Dr. S will read the EEG, when he finds it. Hopefully he will let us know what it says, probably nothing.
Great and Wise has decided to add another antibiotic to our arsenal to battle the white count which could be coming fron an upper respiratory bug not affected by the other two medicines. She is going off the original antibiotic today and we are adding one that is from a different family. It's a shotgun approach but I say keep shooting. That's the way I always hunted, shoot enough and the bird eventually runs into the shot.
Marty's arm is still broken (duh) and it still hurts so we haven't had a miracle healing yet. It's swollen and bruised and it hurts for her to even try and use it. She moves her hand and her fingers and she held her Diet Coke a bit last night first steps. Marty will work hard to get use out this arm, she hates being fed, yet she allows it until she can do something about it.
I really appreciate all of the kind thoughts being sent Marty’s way. I’m not sure I understand why it makes a difference but it really does, just knowing people are out there caring. I always make sure Marty knows about all of the people following her life and I read her all of your comments. If you have never had a chance to meet Marty, she really is very resilient, smart and very, very, very stubborn; all of which has helped her throughout our adventures and will help her as we move to a new normal.
Thursday, February 25, 2010
Marty's Latest Trip
What started as something relatively simple, and I say relatively because the hospital is never simple, became complicated Sunday night. We checked into the hospital, Sunday, for a fairly routine treatment of IV antibiotics. The bacteria in her bladder, causing a new urinary tract infection was not sensitive to our normal arsenal of medicine, we did this same thing about a 1 1/2 years ago with success.
That night, right as they were starting the IV, right after Marty had her usual night time meds, after I had gone home for the night, Marty had a major seizure. Marty's has had seizures, but the last was in April of 2007 and were directly related to an asthma medicine Marty was taking and quit taking back then. She has had no apparent seizure activity since then and taking her off the seizure meds really helped her overall recovery as these meds tend to have some debilitating cognitive effects on her.
Nikki was here with Marty when she had the seizure and immediately called the nurse and they immediately responded with their rapid response team and made sure Marty was not in danger. The staff, Nikkie, all did a great job. When I got there Marty was just starting to recover from the seizure, these electronic assaults on your brain require recovery time. As Marty began to regain her bearings she knew Nikki, she knew me and was oriented at least to place, she did complain about her arm burning. She kept saying, "My arm, my arm, my arm", and could not really move her arm. We figured the IV was burning, the medicine was burning, and the seizure was limiting her ability to move it. I left the hospital for a little sleep when it was clear Marty was stable and safe.
When I came back in Monday a.m. Marty had not slept well and was complaining about her arm. Keep in mind Marty does not complain, if she says it hurts, it hurts; and she said it hurt. I looked at the arm and the shoulder was starting to swell and I called the nurse, who called Great and Wise (who has been very great and wise throughout all of this), who ordered an x-ray.
This is the only complaint I have of the hospital stay. The x-ray was ordered at 10 a.m... It was finally done at 5:15 p.m... ; Much too long. They came up twice to get Marty in a wheel chair but she was in pain and medicated with both pain meds and Ativan to ward off any more seizures and was not wheel chair capable. We sent them back twice for a gurney and twice they never returned. Our nurse kept calling, I kept harping and began to get very frustrated as Marty's shoulder continued to swell and bruise. It was clear something was wrong.
Great and Wise came in right after the x-ray was finally done, in Marty's room. We talked about the UTI, blood test results and then he went to check on the shoulder x-ray. I knew when he came back the news wasn't good. I had thought the shoulder was separated, it was a compound fracture, the ball on the top part of the humerus, the large arm bone, had broken off Marty's arm. Apparently, during Marty's seizure she had broken her strong arm, the arm she uses to eat, to play the piano, to drink, to take her meds, to support herself in her wheelchair, to help us help her stand. I know the color must have drained from my face when I heard his words. It sure felt like it.
"What does this mean", I kind of stammered. "Surgery", G & W replied. I went pale again.
Marty and I have often talked about what we needed to do for her in the event new problems arose. She has been very clear, no surgery, she did not want the anesthesia, she did not want another tube in her throat, she did not want to face another recovery. All I saw was she could not move her arm without a lot of pain. It was devastating news and I was immediately taken back to five years ago and all of the false choices we had to face then, do you want it to suck big or bigger?
Marty seemed to get sicker Monday and Tuesday. Great and Wise had already requested another culture on the urine and sure enough we found another bug, not sensitive to the Azactam we were using, but another antibiotic we had used before, he called at 10 p.m. Tuesday night to add the new antibiotic. Wednesday, yesterday, Marty started getting better.
We have talked to an orthopedic surgeon several times over the last couple of days. He said Marty's bones are really older than her age because of the medications she has taken and just the general assault on her body; which explains why the bone broke under the tremendous pressure from the seizure. Her bone density, or lack thereof, really complicated any potential repair and in all likelihood the only surgical option would be to completely replace the shoulder. The other option, do nothing.
The short summary, (I know, I already went past short) we have decided, after talking with our kids, after talking with Marty, after visiting with friends, after visiting with doctors, the surgery is just not worth the risk. Marty is a very high risk surgical candidate and the potential gains from surgery are just not worth the risk; it's just too much to ask of her. We are going to let the arm heal. We are going to work really hard, after it has healed to get Marty back to the point she can fully participate in her care the same way she does today. It's an unknown, but we can handle it, until then Dilaudid is her friend.
As of this writing we are still in the hospital but we have made good strides in dealing with the infection that brought us to the hospital. Marty's white count is much improved as is her sodium, both very positive signs. She needs a little more antibiotic and we are awaiting the results from the EEG to discover next steps regarding seizures. I guess we are starting another new normal.
Good thoughts and prayers are always appreciated.
That night, right as they were starting the IV, right after Marty had her usual night time meds, after I had gone home for the night, Marty had a major seizure. Marty's has had seizures, but the last was in April of 2007 and were directly related to an asthma medicine Marty was taking and quit taking back then. She has had no apparent seizure activity since then and taking her off the seizure meds really helped her overall recovery as these meds tend to have some debilitating cognitive effects on her.
Nikki was here with Marty when she had the seizure and immediately called the nurse and they immediately responded with their rapid response team and made sure Marty was not in danger. The staff, Nikkie, all did a great job. When I got there Marty was just starting to recover from the seizure, these electronic assaults on your brain require recovery time. As Marty began to regain her bearings she knew Nikki, she knew me and was oriented at least to place, she did complain about her arm burning. She kept saying, "My arm, my arm, my arm", and could not really move her arm. We figured the IV was burning, the medicine was burning, and the seizure was limiting her ability to move it. I left the hospital for a little sleep when it was clear Marty was stable and safe.
When I came back in Monday a.m. Marty had not slept well and was complaining about her arm. Keep in mind Marty does not complain, if she says it hurts, it hurts; and she said it hurt. I looked at the arm and the shoulder was starting to swell and I called the nurse, who called Great and Wise (who has been very great and wise throughout all of this), who ordered an x-ray.
This is the only complaint I have of the hospital stay. The x-ray was ordered at 10 a.m... It was finally done at 5:15 p.m... ; Much too long. They came up twice to get Marty in a wheel chair but she was in pain and medicated with both pain meds and Ativan to ward off any more seizures and was not wheel chair capable. We sent them back twice for a gurney and twice they never returned. Our nurse kept calling, I kept harping and began to get very frustrated as Marty's shoulder continued to swell and bruise. It was clear something was wrong.
Great and Wise came in right after the x-ray was finally done, in Marty's room. We talked about the UTI, blood test results and then he went to check on the shoulder x-ray. I knew when he came back the news wasn't good. I had thought the shoulder was separated, it was a compound fracture, the ball on the top part of the humerus, the large arm bone, had broken off Marty's arm. Apparently, during Marty's seizure she had broken her strong arm, the arm she uses to eat, to play the piano, to drink, to take her meds, to support herself in her wheelchair, to help us help her stand. I know the color must have drained from my face when I heard his words. It sure felt like it.
"What does this mean", I kind of stammered. "Surgery", G & W replied. I went pale again.
Marty and I have often talked about what we needed to do for her in the event new problems arose. She has been very clear, no surgery, she did not want the anesthesia, she did not want another tube in her throat, she did not want to face another recovery. All I saw was she could not move her arm without a lot of pain. It was devastating news and I was immediately taken back to five years ago and all of the false choices we had to face then, do you want it to suck big or bigger?
Marty seemed to get sicker Monday and Tuesday. Great and Wise had already requested another culture on the urine and sure enough we found another bug, not sensitive to the Azactam we were using, but another antibiotic we had used before, he called at 10 p.m. Tuesday night to add the new antibiotic. Wednesday, yesterday, Marty started getting better.
We have talked to an orthopedic surgeon several times over the last couple of days. He said Marty's bones are really older than her age because of the medications she has taken and just the general assault on her body; which explains why the bone broke under the tremendous pressure from the seizure. Her bone density, or lack thereof, really complicated any potential repair and in all likelihood the only surgical option would be to completely replace the shoulder. The other option, do nothing.
The short summary, (I know, I already went past short) we have decided, after talking with our kids, after talking with Marty, after visiting with friends, after visiting with doctors, the surgery is just not worth the risk. Marty is a very high risk surgical candidate and the potential gains from surgery are just not worth the risk; it's just too much to ask of her. We are going to let the arm heal. We are going to work really hard, after it has healed to get Marty back to the point she can fully participate in her care the same way she does today. It's an unknown, but we can handle it, until then Dilaudid is her friend.
As of this writing we are still in the hospital but we have made good strides in dealing with the infection that brought us to the hospital. Marty's white count is much improved as is her sodium, both very positive signs. She needs a little more antibiotic and we are awaiting the results from the EEG to discover next steps regarding seizures. I guess we are starting another new normal.
Good thoughts and prayers are always appreciated.
Monday, February 22, 2010
The First One -- Part IV -- Home Again
To paraphrase the great sage, poet and all around good gal, Amy Winehouse, "They tried to put us into Rehab and we said, yes, yes, yes". From my perspective comprehensive rehab was the next step to getting better and going home. It was a new vista with new concepts, ideas, terms and goals. It was a foreign land but a land we wanted to visit.
It just happened one day; as suddenly as we went to Dallas we were back in Waco at Hillcrest Comprehensive Rehab. We met a new Doctor, a new Physicians Assistant, new nurses, new therapists and new social workers. It was new.
In any comp. rehab program the patient has to be able to work, participate in therapy for three hours a day. As I understand it this is a Medicare requirement and frankly one that makes sense. Rehab, therapy is hard; it requires a lot of focus, willingness to extend oneself and a strong desire and belief in healing. It can work wonders. I was very concerned about Marty's ability to be able to withstand the rigor of the program. She wasn't very strong, she hadn't been out of ICU that long and she had just started to do even the most rudimentary things like, sit up. But away we went with all of her tubes and such.
The first couple of days proved out my concerns. The trip from Dallas to Waco exhausted her and starting therapy was slow and largely unsatisfactory, but the therapists were patient and in spite of my own insecurities Marty began to grow stronger and more capable almost daily.
There are several kinds of seminal moments in this particular part of our trial that kind of stick out for me:
• Marty's good friend Sue had the courage to take me aside and say we needed to cover Marty's head. I understand it was disconcerting for the uninitiated to see her with the big "divot" in her forehead and being a guy I never thought about it. I brought one of my caps from home, a guy's hat. One of the nurses, just kind of out of the blue brought Marty a woman's pink cap. She liked that better, and then our other Gail and Sue brought Marty a couple of caps, one of which said, "Under Construction". We still have them.
• I walked into rehab one day, a big day as it turns out and I saw my Marty, with the help of a PT, walking down the hall. She walked about 50 feet. She was wearing her pink hat and support hose; maybe the most beautiful thing I have ever seen.
• After they took out the catheter Marty would not stay in bed. If she needed to go the bathroom she would not wait for help. They set the alarm on the bed and Marty immediately figured out how to turn it off. Marty also managed to pull out all of her other tubes, she was tired of them. First she took out the tracheotomy, and then she removed the PIC line in her arm. I found them both on the floor at different times. Marty was back.
• Marty's return was never exemplified more than when she escaped. She had been hospitalized at Hillcrest several years before for minor surgery. She remembered going down and out to smoke. It was her routine and she by God wanted to smoke. One afternoon when I was out, right after therapy finished for the day she managed to wheel herself onto the staff elevator. She didn't have the wherewithal to go down, so she went up, she just knew if she could get outside she could smoke. They found her pretty quickly on one of the upper floors.
• Marty quickly moved from exhausted and bed bound to mad bored and she was really hard to keep entertained. Weekends in rehab, when there is no rehab are torture. The kids came down, friends and family came in, but it just sucked.
June 8, 2005 we went home, 66 days after Marty should have died, after Marty should have been completely disabled, we walked to the car, got into the car and drove home. I had to take lessons on how to handle Marty's newly discovered diabetes, we talked with Social workers about support, and we knew we had one more surgery left, the one to make her head round again, to replace the bone plate. Regardless of how scared I was of my new role and responsibility, on June 8 we walked into our home again.
Post Script --
Now the question -- still on my bathroom wall is a calendar. It's a rather ugly calendar; it has the front cover of the Saturday Evening Post from the 1920's. Some waif like woman with a flapper's kind of hat, and the calendar is stuck on April of 2005. I have not been able to bring myself to take it down. Within the next weeks we are going to remodel that bathroom. I don't know if I can take the calendar down and leave it down and I don't know why.
It just happened one day; as suddenly as we went to Dallas we were back in Waco at Hillcrest Comprehensive Rehab. We met a new Doctor, a new Physicians Assistant, new nurses, new therapists and new social workers. It was new.
In any comp. rehab program the patient has to be able to work, participate in therapy for three hours a day. As I understand it this is a Medicare requirement and frankly one that makes sense. Rehab, therapy is hard; it requires a lot of focus, willingness to extend oneself and a strong desire and belief in healing. It can work wonders. I was very concerned about Marty's ability to be able to withstand the rigor of the program. She wasn't very strong, she hadn't been out of ICU that long and she had just started to do even the most rudimentary things like, sit up. But away we went with all of her tubes and such.
The first couple of days proved out my concerns. The trip from Dallas to Waco exhausted her and starting therapy was slow and largely unsatisfactory, but the therapists were patient and in spite of my own insecurities Marty began to grow stronger and more capable almost daily.
There are several kinds of seminal moments in this particular part of our trial that kind of stick out for me:
• Marty's good friend Sue had the courage to take me aside and say we needed to cover Marty's head. I understand it was disconcerting for the uninitiated to see her with the big "divot" in her forehead and being a guy I never thought about it. I brought one of my caps from home, a guy's hat. One of the nurses, just kind of out of the blue brought Marty a woman's pink cap. She liked that better, and then our other Gail and Sue brought Marty a couple of caps, one of which said, "Under Construction". We still have them.
• I walked into rehab one day, a big day as it turns out and I saw my Marty, with the help of a PT, walking down the hall. She walked about 50 feet. She was wearing her pink hat and support hose; maybe the most beautiful thing I have ever seen.
• After they took out the catheter Marty would not stay in bed. If she needed to go the bathroom she would not wait for help. They set the alarm on the bed and Marty immediately figured out how to turn it off. Marty also managed to pull out all of her other tubes, she was tired of them. First she took out the tracheotomy, and then she removed the PIC line in her arm. I found them both on the floor at different times. Marty was back.
• Marty's return was never exemplified more than when she escaped. She had been hospitalized at Hillcrest several years before for minor surgery. She remembered going down and out to smoke. It was her routine and she by God wanted to smoke. One afternoon when I was out, right after therapy finished for the day she managed to wheel herself onto the staff elevator. She didn't have the wherewithal to go down, so she went up, she just knew if she could get outside she could smoke. They found her pretty quickly on one of the upper floors.
• Marty quickly moved from exhausted and bed bound to mad bored and she was really hard to keep entertained. Weekends in rehab, when there is no rehab are torture. The kids came down, friends and family came in, but it just sucked.
June 8, 2005 we went home, 66 days after Marty should have died, after Marty should have been completely disabled, we walked to the car, got into the car and drove home. I had to take lessons on how to handle Marty's newly discovered diabetes, we talked with Social workers about support, and we knew we had one more surgery left, the one to make her head round again, to replace the bone plate. Regardless of how scared I was of my new role and responsibility, on June 8 we walked into our home again.
Post Script --
Now the question -- still on my bathroom wall is a calendar. It's a rather ugly calendar; it has the front cover of the Saturday Evening Post from the 1920's. Some waif like woman with a flapper's kind of hat, and the calendar is stuck on April of 2005. I have not been able to bring myself to take it down. Within the next weeks we are going to remodel that bathroom. I don't know if I can take the calendar down and leave it down and I don't know why.
Sunday, February 21, 2010
We're Back, Again
We're there, again. Providence Hospital, Waco, Texas, 5th floor this time. We came in the Presbyterian way, decently and in order. It turns out ol Larry wasn't just being his usual hyper vigilant self but obviously has been gifted with the power of super diagnosis; we have a urinary tract infection.
In point of fact it's not a really bad one; it's just one that we can't treat with oral antibiotics. We are once again fighting the same bacterial nemesis we did this past summer, only this time it's in the bladder not the lungs, but it's still pseudomonas aeruginosa. It's good we were able to identify the bug, identify it early and identify the appropriate antibiotic to kill it.
Great and Wise checked Marty's culture yesterday, yes on Saturday and called to give us the news. We decided to wait until today, Sunday, after church to come to the hospital. He called today to make sure there was a room at the inn, there was and here we are on the 5th floor, home of women's care and maternity. I like it up here, women are cleaner I think.
We came up and met the good Doctor and he checked us in and wrote all of the appropriate orders and we now are the owners of a brand new IV through which they will pour the bug fighting antibacterial and other goodies as needed. I told Great and Wise I needed to send Mrs. Great and Wise some flowers; she puts up with a lot. I'm sure she knows she is married to an amazing man but she needs to know how he makes people’s lives better.
Hopefully we can blow this joint by Wednesday, but that all depends on the bug. We can take comfort in knowing Nikki, Erica and Renae will be on the job and we have wonderful health care providers, providing health care. We shall see how it goes, so far, so smooth.
In point of fact it's not a really bad one; it's just one that we can't treat with oral antibiotics. We are once again fighting the same bacterial nemesis we did this past summer, only this time it's in the bladder not the lungs, but it's still pseudomonas aeruginosa. It's good we were able to identify the bug, identify it early and identify the appropriate antibiotic to kill it.
Great and Wise checked Marty's culture yesterday, yes on Saturday and called to give us the news. We decided to wait until today, Sunday, after church to come to the hospital. He called today to make sure there was a room at the inn, there was and here we are on the 5th floor, home of women's care and maternity. I like it up here, women are cleaner I think.
We came up and met the good Doctor and he checked us in and wrote all of the appropriate orders and we now are the owners of a brand new IV through which they will pour the bug fighting antibacterial and other goodies as needed. I told Great and Wise I needed to send Mrs. Great and Wise some flowers; she puts up with a lot. I'm sure she knows she is married to an amazing man but she needs to know how he makes people’s lives better.
Hopefully we can blow this joint by Wednesday, but that all depends on the bug. We can take comfort in knowing Nikki, Erica and Renae will be on the job and we have wonderful health care providers, providing health care. We shall see how it goes, so far, so smooth.
The First One -- Part III -- Out of ICU
I met our move from ICU with sort of mixed feelings. We were leaving the comfort of constant nursing and monitoring but we seemed to have finally taken the first steps to going home and getting a glimpse of our future.
We moved to a regular room when Marty got out of "minor" surgery, putting a shunt in her skull to her stomach to drain excess cerebral spinal fluid. This was a huge step, getting off a Ventrix which drains the CSF via gravity.
Marty was just starting to gain awareness of her surroundings but she looked awful. She had a semi-circular scar on her left front forehead. Actually, she had no left front forehead, she had no bone there, instead there was the scar and depression in her head about four inches across. Her hair had been partially shaved; it was matted with blood and sweat from the weeks lying on her back. She had a tracheotomy in her throat and a feeding tube in her stomach and she had lost probably 30 pounds. She was a mess and I was in our room with her alone and suddenly very aware how inadequate I was and how completely unprepared I was to make this next step.
The first day progressed nicely. Some time during that first night I heard Marty trying really hard to breathe she was gasping for air. I looked over and she was clearly struggling to get a breath and slowly turning very, very pale, she was turning blue, clearly struggling. I pushed the emergency button, told the person who answered Marty was suffocating and the nurses came running. A respiratory tech came in quickly and cleared out her trache, which had become clogged with gunk from her lungs. Once clean and clear Marty began to get air into her lungs again and color quickly returned to her face. I can't say the same about my face; needless to say I didn't sleep that night, at all. The next day they moved us closer to the nurse's station and attached an oxometer to her finger to constantly monitor her oxygen levels.
It didn't take long before Marty began to exert her true self in the room. Her recovery was actually quite remarkable. She had been near death, I mean really near death; it wasn't play like, it wasn't a dream, she almost died and now here she was refusing to leave the oxygen monitor on, taking off her oxygen and pulling and yanking on every tube inserted or attached to her. The more aware she became, the more obstinate she became.
To say I was tired doesn't really describe the feeling. I've worked hard in my life. I've worked long hours, through nights and days. I've never felt as tired. I struggled to stay awake in the day and couldn't sleep at night. I was blessed to have kids who were brave enough to stay with their Mother at night or parents who would stay with their daughter-in-law during the day. Matt and Sarah would stay, Erin would stay, and I would go to Matt and Sarah's house to sleep.
After three or four days of this routine the Doctors and Therapists began to talk about moving to the next step, comprehensive rehabilitation. No, of course, I knew nothing about any of that, but hospitals have social workers and they apparently know about everything. We started talking to Comp Rehab at Hillcrest in Waco. To qualify Marty would have to be able to work, do therapy, three hours a day. It seemed an impossible task. A really nice lady called to talk to me about the requirements and said they would need to assess Marty to see if she qualified. Not knowing how all of this worked and being the controlling type my first response was, “Well I don’t know if we want to use you guys anyway”; to quote Bugs Bunny, “What a maroon”.
Marty started sitting up in a wheel chair at Zale Lipshy. The first physical therapist we met put a gait belt on her, a belt you put around the waist to help control the patient, and got her up and moved her into the chair. I had never seen this kind of action before and it scared the hell out of me. Marty hadn't been up at all and all of the sudden this little bitty thing of a therapist was pulling and tugging and swinging on Marty and had her in a chair. Marty sat up about an hour the first time. It felt like a miracle and another huge step. It was the first time Marty had been up in about six weeks.
The second time she got up we cut her hair off. Her hair was a disaster. When they did the original surgery they had only shaved a portion of her head. (Note: if you or any of your loved ones is about to have brain surgery shave the head if you can) Her remaining hair was filthy and matted with blood and goo from the surgery. When she got up in her chair Erin found a pair of scissors and began working on her head. I know it must have killed her soul just a bit to do this to her Mother. The hair at the back just came out in clumps. Within about an hour Marty at least looked cleaner. Greater love hath no daughter than buzzing her Momma's head.
Funny thing about being in a hospital, you wait and wait to leave, are often disappointed because you can't, then all of the sudden everything falls into place and the next thing you know you are running to catch the ambulance carting your wife to Waco. I didn't catch up but Sue and Gail met Marty at Hillcrest. It’s a blessing to have friends. It was the start of rehab and once again I got to see just how little I knew about any of this stuff; that’s okay because knowing is often very frightening.
We moved to a regular room when Marty got out of "minor" surgery, putting a shunt in her skull to her stomach to drain excess cerebral spinal fluid. This was a huge step, getting off a Ventrix which drains the CSF via gravity.
Marty was just starting to gain awareness of her surroundings but she looked awful. She had a semi-circular scar on her left front forehead. Actually, she had no left front forehead, she had no bone there, instead there was the scar and depression in her head about four inches across. Her hair had been partially shaved; it was matted with blood and sweat from the weeks lying on her back. She had a tracheotomy in her throat and a feeding tube in her stomach and she had lost probably 30 pounds. She was a mess and I was in our room with her alone and suddenly very aware how inadequate I was and how completely unprepared I was to make this next step.
The first day progressed nicely. Some time during that first night I heard Marty trying really hard to breathe she was gasping for air. I looked over and she was clearly struggling to get a breath and slowly turning very, very pale, she was turning blue, clearly struggling. I pushed the emergency button, told the person who answered Marty was suffocating and the nurses came running. A respiratory tech came in quickly and cleared out her trache, which had become clogged with gunk from her lungs. Once clean and clear Marty began to get air into her lungs again and color quickly returned to her face. I can't say the same about my face; needless to say I didn't sleep that night, at all. The next day they moved us closer to the nurse's station and attached an oxometer to her finger to constantly monitor her oxygen levels.
It didn't take long before Marty began to exert her true self in the room. Her recovery was actually quite remarkable. She had been near death, I mean really near death; it wasn't play like, it wasn't a dream, she almost died and now here she was refusing to leave the oxygen monitor on, taking off her oxygen and pulling and yanking on every tube inserted or attached to her. The more aware she became, the more obstinate she became.
To say I was tired doesn't really describe the feeling. I've worked hard in my life. I've worked long hours, through nights and days. I've never felt as tired. I struggled to stay awake in the day and couldn't sleep at night. I was blessed to have kids who were brave enough to stay with their Mother at night or parents who would stay with their daughter-in-law during the day. Matt and Sarah would stay, Erin would stay, and I would go to Matt and Sarah's house to sleep.
After three or four days of this routine the Doctors and Therapists began to talk about moving to the next step, comprehensive rehabilitation. No, of course, I knew nothing about any of that, but hospitals have social workers and they apparently know about everything. We started talking to Comp Rehab at Hillcrest in Waco. To qualify Marty would have to be able to work, do therapy, three hours a day. It seemed an impossible task. A really nice lady called to talk to me about the requirements and said they would need to assess Marty to see if she qualified. Not knowing how all of this worked and being the controlling type my first response was, “Well I don’t know if we want to use you guys anyway”; to quote Bugs Bunny, “What a maroon”.
Marty started sitting up in a wheel chair at Zale Lipshy. The first physical therapist we met put a gait belt on her, a belt you put around the waist to help control the patient, and got her up and moved her into the chair. I had never seen this kind of action before and it scared the hell out of me. Marty hadn't been up at all and all of the sudden this little bitty thing of a therapist was pulling and tugging and swinging on Marty and had her in a chair. Marty sat up about an hour the first time. It felt like a miracle and another huge step. It was the first time Marty had been up in about six weeks.
The second time she got up we cut her hair off. Her hair was a disaster. When they did the original surgery they had only shaved a portion of her head. (Note: if you or any of your loved ones is about to have brain surgery shave the head if you can) Her remaining hair was filthy and matted with blood and goo from the surgery. When she got up in her chair Erin found a pair of scissors and began working on her head. I know it must have killed her soul just a bit to do this to her Mother. The hair at the back just came out in clumps. Within about an hour Marty at least looked cleaner. Greater love hath no daughter than buzzing her Momma's head.
Funny thing about being in a hospital, you wait and wait to leave, are often disappointed because you can't, then all of the sudden everything falls into place and the next thing you know you are running to catch the ambulance carting your wife to Waco. I didn't catch up but Sue and Gail met Marty at Hillcrest. It’s a blessing to have friends. It was the start of rehab and once again I got to see just how little I knew about any of this stuff; that’s okay because knowing is often very frightening.
Tuesday, February 16, 2010
Anxious
I hate not knowing. I hate not knowing how she feels. I hate not knowing exactly what is going on with Marty, what is happening to her body. It is clearly, for me, the worst part of this whole thing.
Marty's white count is elevated, even higher than her normal. She's on an antibiotic we started last night. We have talked to Great and Wise and he thinks a rather angry looking cyst is the reason for the infection, he's probably right, we will see him tomorrow. I still hate not knowing for sure.
It makes me anxious and I don't do anxious very well. Being out of control is compounded by anxious, anxious is physically uncomfortable, anxious is emotionally and psychologically uncomfortable, anxious makes me grouchier than normal and I hate that too. I know, just breathe, right?
Marty's blood pressure and oxygen are good. Actually, all of the indicators, except WBC are good, I just feel uncomfortable about how she "seems” because I don't understand it, because she seems a bit abnormal. Maybe I'm just being good old hyper vigilant Larry, which would be great, that would be me having anxiety over nothing and it can just disappear as quickly as it came. The problem is we won't know for a while, so I get to be worried, anxious and grouchy all at the same time, so, sorry to everyone that gets to come in contact with me.
I hate not knowing and not knowing seems to be part of our new normal
Marty's white count is elevated, even higher than her normal. She's on an antibiotic we started last night. We have talked to Great and Wise and he thinks a rather angry looking cyst is the reason for the infection, he's probably right, we will see him tomorrow. I still hate not knowing for sure.
It makes me anxious and I don't do anxious very well. Being out of control is compounded by anxious, anxious is physically uncomfortable, anxious is emotionally and psychologically uncomfortable, anxious makes me grouchier than normal and I hate that too. I know, just breathe, right?
Marty's blood pressure and oxygen are good. Actually, all of the indicators, except WBC are good, I just feel uncomfortable about how she "seems” because I don't understand it, because she seems a bit abnormal. Maybe I'm just being good old hyper vigilant Larry, which would be great, that would be me having anxiety over nothing and it can just disappear as quickly as it came. The problem is we won't know for a while, so I get to be worried, anxious and grouchy all at the same time, so, sorry to everyone that gets to come in contact with me.
I hate not knowing and not knowing seems to be part of our new normal
Monday, February 15, 2010
The First One -- Part II -- Parkland
Knowing we would be in Dallas for a few days I ran home to pack some clothes and feed the Maggie (our dog) right after Marty left in the ambulance. It was time to call the kids and let them know what was going on. I called Matt and Sarah first. They lived in Dallas and immediately said they would be at Parkland to meet the ambulance and be there when Marty got there.
Next was Erin in Austin. I didn't have a whole lot to tell any of the kids at this point because I really didn't understand all of the implications of a ruptured aneurysm. I just didn't know enough about what we were dealing with to be able to explain it to anyone. Erin wanted to immediately get in her car and drive to Dallas. This worried me, it was late and I just didn't know what was going to happen. She wouldn't have it any other way. She and her then boyfriend, now known as the jerk, got in the car and drove to Dallas.
Marty got to Parkland Hospital first, Matt and Sarah got there immediately after and I got there about 45 minutes later. Parkland Hospital is the county hospital for Dallas County and has a world class trauma center and when I first entered the emergency room I felt like a country bumpkin. I was clearly out of my element. This was a huge medical center and had a very urban feel, as opposed to the hospitals in Waco. To get back to the ER room for Marty you had to get a pass and go through a couple of checkpoints, one with a metal detector. This was a different world. Parkland came to represent both the place that saved Marty's life and my image of a third world country with a McDonald's that stayed open 23 hours a day (closed an hour a day for cleaning).
I found Marty, Matt and Sarah. Marty, on the surface, was doing okay, but she was getting more and more confused. She was checked and eventually an angiogram was done to accurately diagnose and locate the cause of the bleeding in her brain. A doctor I had never seen, met or heard of came to me and said if they didn't do cranial surgery, now, Marty would likely die. I didn't get a chance to check on him, the facilities or the skills of the people around him, he didn't take me into any little room and show me an x-ray, he simply said there are no other choices. The only question I could think to ask was have you done this before.
By 8:30 a.m. Sunday morning, April 3, Marty was in surgery with her brain exposed at Parkland Hospital in Dallas. Since it was Sunday the only people around were families of trauma patients so it wasn't very busy and we kept looking for a place to wait. The waiting room at Parkland is not great; in fact it pretty well sucks, so we found ourselves congregated in a small room down the hall. We waited and then waited some more. I think we ate McDonalds, Matt, Sarah, Erin, Dylan and the Minister who married Matt and Sarah. We waited and didn't really know what we were waiting for; none of us really understood what was happening. It was better that way, ignorance really is bliss.
At 2:30 p.m. the doctor I had seen once before and actually would never see again found us. He said Marty had come through the surgery okay but there had been a lot of bleeding and a lot of swelling in the brain. He said they had to give her several pints of blood and we wouldn't know about her prognosis for several days, until the swelling of her brain had reduced. He said they had left out part of her skull, the front left bone plate. This was when I finally understood just how devastating, just how intrusive, just how horrible what had happened was. When the doctor left I finally wept, I wept with relief that Marty was still alive, I wept with fear about the future, I wept from exhaustion.
The next few days were pretty much a dream of ebbs and flows, waxing and waning. I learned about vasospasms, the way a brain copes when exposed to blood. I learned about angiograms, CV filters, blood clots, seizures, ventilators, oxygen saturation levels and how nurses do neurological exams. I learned stuff I never wanted to know. I learned that in the morning at Parkland Hospital you can't get a chair outside of intensive care because it's so crowded, I learned about case managers for insurance companies and I learned Parkland was not in my COBRA insurance network so we moved next door to Zale-Lipshy.
I learned that residents really do make grand rounds like you see on the medical shows on TV and that if you want to know something you need to figure out what that schedule is. I learned the nurses are the ones who care for your loved one the best and you should try and work with them, not against them, anger maybe a natural condition, but it is not helpful in getting along in the medical milieu.
Marty was in the ICU at either Parkland or Zale for 36 days. Most of that time she was breathing with the assistance of a ventilator and was unconscious. The unconscious part was good for her. During that time I was able to spend each day by her bed, reading to her, listening to music and telling and retelling her about her life and our life, every day, it's what I did. During that time she had three more surgeries to insert a feeding tube and a tracheotomy and a shunt to help drain cerebral spinal fluid. Marty had vasospasms for two weeks, a couple of seizures and pneumonia. It was the single saddest, hardest time of my life. If not for my kids, my parents and siblings and friends it would have been unbearable. I can't count how much time they all spent with me in the ICU waiting room.
Next was Erin in Austin. I didn't have a whole lot to tell any of the kids at this point because I really didn't understand all of the implications of a ruptured aneurysm. I just didn't know enough about what we were dealing with to be able to explain it to anyone. Erin wanted to immediately get in her car and drive to Dallas. This worried me, it was late and I just didn't know what was going to happen. She wouldn't have it any other way. She and her then boyfriend, now known as the jerk, got in the car and drove to Dallas.
Marty got to Parkland Hospital first, Matt and Sarah got there immediately after and I got there about 45 minutes later. Parkland Hospital is the county hospital for Dallas County and has a world class trauma center and when I first entered the emergency room I felt like a country bumpkin. I was clearly out of my element. This was a huge medical center and had a very urban feel, as opposed to the hospitals in Waco. To get back to the ER room for Marty you had to get a pass and go through a couple of checkpoints, one with a metal detector. This was a different world. Parkland came to represent both the place that saved Marty's life and my image of a third world country with a McDonald's that stayed open 23 hours a day (closed an hour a day for cleaning).
I found Marty, Matt and Sarah. Marty, on the surface, was doing okay, but she was getting more and more confused. She was checked and eventually an angiogram was done to accurately diagnose and locate the cause of the bleeding in her brain. A doctor I had never seen, met or heard of came to me and said if they didn't do cranial surgery, now, Marty would likely die. I didn't get a chance to check on him, the facilities or the skills of the people around him, he didn't take me into any little room and show me an x-ray, he simply said there are no other choices. The only question I could think to ask was have you done this before.
By 8:30 a.m. Sunday morning, April 3, Marty was in surgery with her brain exposed at Parkland Hospital in Dallas. Since it was Sunday the only people around were families of trauma patients so it wasn't very busy and we kept looking for a place to wait. The waiting room at Parkland is not great; in fact it pretty well sucks, so we found ourselves congregated in a small room down the hall. We waited and then waited some more. I think we ate McDonalds, Matt, Sarah, Erin, Dylan and the Minister who married Matt and Sarah. We waited and didn't really know what we were waiting for; none of us really understood what was happening. It was better that way, ignorance really is bliss.
At 2:30 p.m. the doctor I had seen once before and actually would never see again found us. He said Marty had come through the surgery okay but there had been a lot of bleeding and a lot of swelling in the brain. He said they had to give her several pints of blood and we wouldn't know about her prognosis for several days, until the swelling of her brain had reduced. He said they had left out part of her skull, the front left bone plate. This was when I finally understood just how devastating, just how intrusive, just how horrible what had happened was. When the doctor left I finally wept, I wept with relief that Marty was still alive, I wept with fear about the future, I wept from exhaustion.
The next few days were pretty much a dream of ebbs and flows, waxing and waning. I learned about vasospasms, the way a brain copes when exposed to blood. I learned about angiograms, CV filters, blood clots, seizures, ventilators, oxygen saturation levels and how nurses do neurological exams. I learned stuff I never wanted to know. I learned that in the morning at Parkland Hospital you can't get a chair outside of intensive care because it's so crowded, I learned about case managers for insurance companies and I learned Parkland was not in my COBRA insurance network so we moved next door to Zale-Lipshy.
I learned that residents really do make grand rounds like you see on the medical shows on TV and that if you want to know something you need to figure out what that schedule is. I learned the nurses are the ones who care for your loved one the best and you should try and work with them, not against them, anger maybe a natural condition, but it is not helpful in getting along in the medical milieu.
Marty was in the ICU at either Parkland or Zale for 36 days. Most of that time she was breathing with the assistance of a ventilator and was unconscious. The unconscious part was good for her. During that time I was able to spend each day by her bed, reading to her, listening to music and telling and retelling her about her life and our life, every day, it's what I did. During that time she had three more surgeries to insert a feeding tube and a tracheotomy and a shunt to help drain cerebral spinal fluid. Marty had vasospasms for two weeks, a couple of seizures and pneumonia. It was the single saddest, hardest time of my life. If not for my kids, my parents and siblings and friends it would have been unbearable. I can't count how much time they all spent with me in the ICU waiting room.
Tuesday, February 9, 2010
The First One -- Part One
I can't remember (the hazards of a cluttered mind) if I have ever posted much about Marty's first stroke. If you are reading new information -- good on ya -- if you are reading retread stuff, read it anyway, it might be better this time or you can simply read it and count how many times I misuse quite and quiet -- trust me it's a lot.
April 2, 2005 we are at our home in Waco. It's about a year since Marty's Father, Arty, has passed away from a massive, unexpected stroke, about six months since Marty was diagnosed with Multiple Sclerosis and about three months after TXU divorced me.
I'm just starting to feel somewhat normal and Marty and I are just starting to figure out how to live with each 24 hours a day again. Marty is going through the house cleaning out excess bedding, counting blankets and quilts (about 30). I'm outside working in the yard. I am filthy, sweaty, nasty, a good cleansing kind of dirty. It's about 2 p.m. and we have both worked through lunch.
Marty called me to come in inside, she said she is not feeling well, that she has a bad headache. I'm aggravated because I'm hungry, I still have things to do outside, and I'm just kind of a grouch. Marty is sitting in our living room in the blue leather chair our cat had scratched the day we bought it (funny what sticks in your brain). She is sitting back in the chair and says, "I have the worst headache I've ever had". I would later understand the significance of these words.
Headaches were nothing new to Marty, they were something of a constant and I was a little perturbed she seemed to be making a big deal of this one. I, of course, tried to cure the headache, that’s what husbands do, we fix things. Advil, Tylenol, ice bag, hot pad from the microwave? She had already tried Advil. The cold sounded good to Marty, but it was no help. Time was moving, Marty wasn't getting better, in fact she was getting worse and my grouchiness quickly was moving to anxiety. I finally broached the subject of an ambulance. I knew it wasn't good when Marty said that was probably a good idea.
In Woodway, where we live, the police arrive first after you call 911; they were there within five minutes, the ambulance soon to follow. When the EMT's arrived they checked vitals, none of which were really alarming but Marty still was in a great deal of pain and was nauseated. They asked if we wanted them to take her to the hospital or if we wanted to go ourselves. Marty said she didn't think she could get up, I said we are going by ambulance. This was the last time I would see Marty sit up for about two months.
We got to Providence Hospital and to the emergency room quickly and were moved to a room (sort of a room) with three walls and a curtain. I knew nothing, I did not know how to behave, what to expect or who to expect. I was a hospital novice; Marty was the one who knew how to do this stuff. I answered all of the questions I could about Marty's habits, medicines, etc., etc... Marty's head was still killing her and slowly, very slowly I was beginning to see levels of uncertainty and confusion in her. She was a bit confused about what was going on, where we were, why we were there and what people were doing.
A young red-haired doctor in cowboy boots came in and talked with us briefly and ordered some pain relief for Marty and told us what he would do next -- CATSCAN. The CT scan was done within about an hour. It was now about 5 p.m. or so. We waited. The baby doctor (very young) came back and said he was afraid he had some bad news; the CT showed Marty was bleeding in her brain. This kind of washed over me and my ignorance once again protected me, I had no idea of the implications.
My first thought, okay, let's fix it, you can do that; she doesn't appear to be that sick, I can't see any blood, she's just getting more and more confused and making less and less sense. Let's do this, I thought. Baby Doc says they can't fix it here; they need to do a better neurological x-ray and then decide a course of treatment. They would send us to either Dallas or Scott and White in Temple, whoever could take us. It was about 6 p.m. on Saturday. I said let's go.
At about 7 p.m. they came in and said we were going to Parkland Hospital in Dallas. By about 8 p.m. Marty is loaded into an ambulance and I have secured a promise from a really nice EMT lady she will call if anything happens on the way or when they get to Parkland. I now realize I might not ever see Marty alive again and fear and anxiety start to claw at my insides and my brain. We are about to start a new course for our lives and I can feel it and it's really, really scary.
April 2, 2005 we are at our home in Waco. It's about a year since Marty's Father, Arty, has passed away from a massive, unexpected stroke, about six months since Marty was diagnosed with Multiple Sclerosis and about three months after TXU divorced me.
I'm just starting to feel somewhat normal and Marty and I are just starting to figure out how to live with each 24 hours a day again. Marty is going through the house cleaning out excess bedding, counting blankets and quilts (about 30). I'm outside working in the yard. I am filthy, sweaty, nasty, a good cleansing kind of dirty. It's about 2 p.m. and we have both worked through lunch.
Marty called me to come in inside, she said she is not feeling well, that she has a bad headache. I'm aggravated because I'm hungry, I still have things to do outside, and I'm just kind of a grouch. Marty is sitting in our living room in the blue leather chair our cat had scratched the day we bought it (funny what sticks in your brain). She is sitting back in the chair and says, "I have the worst headache I've ever had". I would later understand the significance of these words.
Headaches were nothing new to Marty, they were something of a constant and I was a little perturbed she seemed to be making a big deal of this one. I, of course, tried to cure the headache, that’s what husbands do, we fix things. Advil, Tylenol, ice bag, hot pad from the microwave? She had already tried Advil. The cold sounded good to Marty, but it was no help. Time was moving, Marty wasn't getting better, in fact she was getting worse and my grouchiness quickly was moving to anxiety. I finally broached the subject of an ambulance. I knew it wasn't good when Marty said that was probably a good idea.
In Woodway, where we live, the police arrive first after you call 911; they were there within five minutes, the ambulance soon to follow. When the EMT's arrived they checked vitals, none of which were really alarming but Marty still was in a great deal of pain and was nauseated. They asked if we wanted them to take her to the hospital or if we wanted to go ourselves. Marty said she didn't think she could get up, I said we are going by ambulance. This was the last time I would see Marty sit up for about two months.
We got to Providence Hospital and to the emergency room quickly and were moved to a room (sort of a room) with three walls and a curtain. I knew nothing, I did not know how to behave, what to expect or who to expect. I was a hospital novice; Marty was the one who knew how to do this stuff. I answered all of the questions I could about Marty's habits, medicines, etc., etc... Marty's head was still killing her and slowly, very slowly I was beginning to see levels of uncertainty and confusion in her. She was a bit confused about what was going on, where we were, why we were there and what people were doing.
A young red-haired doctor in cowboy boots came in and talked with us briefly and ordered some pain relief for Marty and told us what he would do next -- CATSCAN. The CT scan was done within about an hour. It was now about 5 p.m. or so. We waited. The baby doctor (very young) came back and said he was afraid he had some bad news; the CT showed Marty was bleeding in her brain. This kind of washed over me and my ignorance once again protected me, I had no idea of the implications.
My first thought, okay, let's fix it, you can do that; she doesn't appear to be that sick, I can't see any blood, she's just getting more and more confused and making less and less sense. Let's do this, I thought. Baby Doc says they can't fix it here; they need to do a better neurological x-ray and then decide a course of treatment. They would send us to either Dallas or Scott and White in Temple, whoever could take us. It was about 6 p.m. on Saturday. I said let's go.
At about 7 p.m. they came in and said we were going to Parkland Hospital in Dallas. By about 8 p.m. Marty is loaded into an ambulance and I have secured a promise from a really nice EMT lady she will call if anything happens on the way or when they get to Parkland. I now realize I might not ever see Marty alive again and fear and anxiety start to claw at my insides and my brain. We are about to start a new course for our lives and I can feel it and it's really, really scary.
Sunday, February 7, 2010
Peanut Butter
Marty and I have spent all of this weekend at the lake. It's cold, a bit windy but very peaceful. This is exactly where we need to be.
Matt, Sarah, Erin Lyle and our grandson, King Noah Bob, graced us with their presence for the weekend. This is exactly why we like to come to the lake, they all like coming here too.
Noah is getting bigger, likes to sit up in his Bopi or Bumpy (I can't keep this stuff straight) chair and survey his kingdom. He sits there, smiles his little toothless grin and really kind of melts your heart. I kept telling him he was a "pretty boy", Matt kept saying don't call him pretty. Regardless, he is a fine looking fellow and a happy lad.
When we raised Matt and Erin we tried to teach them tolerance. We wanted them to learn to listen to others, accept disagreement, have empathy, but above all try to never see yourself as better than others. Over this weekend I learned that both of my kids and their significant others have a dark secret. They are all, all four, peanut butter bigots.
I never knew, I never would have thought it was that important. They don't like my peanut butter; they either have to bring their own or they won’t eat a PB&J. Poor Lyle was stuck eating a peanut butter and jelly sandwich with low sugar jelly and my natural peanut butter. It’s not like it’s an off-brand, it’s not ACME peanut butter, it’s the good stuff.
Well, I say tough, grow up, kick the hydrogenated fat and get off your peanut butter high horse. I know all peanut butter is not created equal but this is good stuff and for all four of these adults to rise up in peanut butter protest is simply unconscionable.
Our kids and their chosen companions are old enough and should be wise enough to know that you can't always have Jif or Peter Pan that the world is a broad place and there are all kinds of peanut butter, some of which is actually better for you than others. Peanut butter is like life, sometimes you just have to tough it out and accept change and try something new and do it with an open mind you might find the healthier stuff is almost as good. Sacrifice for the future, cut the deficit now, do something about crime, eat better peanut butter.
As a parent I have always believed there are some things we should never know about our children. As a child I know there are some things I don't particularly want my parents to know. I'm proud of all of my kids -- but I have to say this whole peanut butter affair has opened my eyes in a way I would just as soon have avoided. I’m just not sure about anything any more. (Heavy sigh)
Matt, Sarah, Erin Lyle and our grandson, King Noah Bob, graced us with their presence for the weekend. This is exactly why we like to come to the lake, they all like coming here too.
Noah is getting bigger, likes to sit up in his Bopi or Bumpy (I can't keep this stuff straight) chair and survey his kingdom. He sits there, smiles his little toothless grin and really kind of melts your heart. I kept telling him he was a "pretty boy", Matt kept saying don't call him pretty. Regardless, he is a fine looking fellow and a happy lad.
When we raised Matt and Erin we tried to teach them tolerance. We wanted them to learn to listen to others, accept disagreement, have empathy, but above all try to never see yourself as better than others. Over this weekend I learned that both of my kids and their significant others have a dark secret. They are all, all four, peanut butter bigots.
I never knew, I never would have thought it was that important. They don't like my peanut butter; they either have to bring their own or they won’t eat a PB&J. Poor Lyle was stuck eating a peanut butter and jelly sandwich with low sugar jelly and my natural peanut butter. It’s not like it’s an off-brand, it’s not ACME peanut butter, it’s the good stuff.
Well, I say tough, grow up, kick the hydrogenated fat and get off your peanut butter high horse. I know all peanut butter is not created equal but this is good stuff and for all four of these adults to rise up in peanut butter protest is simply unconscionable.
Our kids and their chosen companions are old enough and should be wise enough to know that you can't always have Jif or Peter Pan that the world is a broad place and there are all kinds of peanut butter, some of which is actually better for you than others. Peanut butter is like life, sometimes you just have to tough it out and accept change and try something new and do it with an open mind you might find the healthier stuff is almost as good. Sacrifice for the future, cut the deficit now, do something about crime, eat better peanut butter.
As a parent I have always believed there are some things we should never know about our children. As a child I know there are some things I don't particularly want my parents to know. I'm proud of all of my kids -- but I have to say this whole peanut butter affair has opened my eyes in a way I would just as soon have avoided. I’m just not sure about anything any more. (Heavy sigh)
Saturday, February 6, 2010
Stroke Facts
Marty's first stroke occurred in April of 2005. She had a ruptured aneurysm, a broken blood vessel in her brain which caused a subarachnoid hemorrhage also known in the medical world as really bad stuff. Marty was one of about 800,000 who had strokes that year, but only one of 3% that had a subarachnoid hemorrhage. Marty was lucky because most who have her type of stroke do not survive beyond six months. We're working on almost five years from the first stroke.
Her second stroke, January 3, 2006, was a more typical stroke, an ischemic stroke which comprises about 85% of all strokes. Again, Marty survived, though the 2nd stroke was the more physically and cognitively impairing of the two strokes. Stroke is the third leading killer in the United States killing approximately 140,000 people a year and the leading cause of incapacitation.
I never really thought about or understood the disabling aspect of strokes or how many people under 65 are affected by strokes. About 200,000 people under 65 are hit by strokes every year. It's not something we think of as a young person's disease, but it can be. Strokes change lives, not just for the person who has the stroke but for all of the families and friends of the stroke victim.
When Marty was training as a Speech Pathologist in Lubbock in the 70’s she worked with elderly stroke patients who had aphasia. We talked about it at the time and Marty often talked about how devastating this disease was for the patient and for the family. It never really registered with me. I never thought stroke would be a part of my life then.
I never really understood all of the underlying difficulties strokes cause. I never thought about the swallowing issues, I never thought about the talking issues, I never thought about the respiratory issues or the urinary tract infections. I never thought about the issues with dressing and bathing, I never thought about the transportation issues or the sleeping issues or any of the myriad difficulties people who have been affected by strokes must deal with every day. It just wasn't part of my plan so I didn't think about it. I'm just thankful I'm young enough, strong enough and we have the financial resources to care for Marty. She gets much better care than most.
The biggest risk factor for strokes -- high blood pressure, it's a big deal. Heart problems, diabetes, and genetics are all risk factors for stroke. Obesity, smoking, inactivity all contribute to strokes. Have your blood pressure checked, take your blood pressure medications, control your diabetes if you have it, don't smoke and exercise. I know all of these are easy to say and in some ways hard to do, but you don't want to have a stroke, you really, really don't.
Recovery from stroke is life long, it doesn’t end when you leave the rehabilitation facility, you are really just starting. Marty’s road to recovery has been long but I believe there are still miles ahead of us. She has continued to improve, her cognition, her ability to think and communicate is still getting better and I think will continue to get better. It will never be the same – our job now is simply to continue to adjust to our new normal. This is a never ending quest.
Her second stroke, January 3, 2006, was a more typical stroke, an ischemic stroke which comprises about 85% of all strokes. Again, Marty survived, though the 2nd stroke was the more physically and cognitively impairing of the two strokes. Stroke is the third leading killer in the United States killing approximately 140,000 people a year and the leading cause of incapacitation.
I never really thought about or understood the disabling aspect of strokes or how many people under 65 are affected by strokes. About 200,000 people under 65 are hit by strokes every year. It's not something we think of as a young person's disease, but it can be. Strokes change lives, not just for the person who has the stroke but for all of the families and friends of the stroke victim.
When Marty was training as a Speech Pathologist in Lubbock in the 70’s she worked with elderly stroke patients who had aphasia. We talked about it at the time and Marty often talked about how devastating this disease was for the patient and for the family. It never really registered with me. I never thought stroke would be a part of my life then.
I never really understood all of the underlying difficulties strokes cause. I never thought about the swallowing issues, I never thought about the talking issues, I never thought about the respiratory issues or the urinary tract infections. I never thought about the issues with dressing and bathing, I never thought about the transportation issues or the sleeping issues or any of the myriad difficulties people who have been affected by strokes must deal with every day. It just wasn't part of my plan so I didn't think about it. I'm just thankful I'm young enough, strong enough and we have the financial resources to care for Marty. She gets much better care than most.
The biggest risk factor for strokes -- high blood pressure, it's a big deal. Heart problems, diabetes, and genetics are all risk factors for stroke. Obesity, smoking, inactivity all contribute to strokes. Have your blood pressure checked, take your blood pressure medications, control your diabetes if you have it, don't smoke and exercise. I know all of these are easy to say and in some ways hard to do, but you don't want to have a stroke, you really, really don't.
Recovery from stroke is life long, it doesn’t end when you leave the rehabilitation facility, you are really just starting. Marty’s road to recovery has been long but I believe there are still miles ahead of us. She has continued to improve, her cognition, her ability to think and communicate is still getting better and I think will continue to get better. It will never be the same – our job now is simply to continue to adjust to our new normal. This is a never ending quest.
Monday, February 1, 2010
Humming
Marty's a hummer. I don't mean that in a pejorative sense, I mean it in a literal sense. She hums all of the time.
Many stroke patients develop some sort of outward affect, some kind of involuntary verbal or physical symptom as a result of the brain damage. When you think about the damage done to a person's brain cells by the stroke it's not surprising. The stroke simply realigns everything.
When Marty first started recovering from her 2nd stroke she would cry a lot. It wasn't with tears or sobbing or wailing, it was vocal crying. To this day I don't know if this was voluntary, involuntary, conscious or unconscious. She certainly had every reason to cry and she didn't seem to be able to control it. It wasn't 100% of the time, but there was a lot of the crying affect, in particular if her mind wasn't otherwise occupied. I became somewhat desensitized to the whole thing, but it was a very emotional issue for all and could be quite disconcerting to the uninitiated. This lasted for several months and I found myself singing with Marty whenever we went to the Doctor's office to keep her distracted. An occupied mind helped and that wasn't easy.
The crying evolved into, "oh, oh, oh”, a lot of "oh, oh, oh." This was better than the crying but it could be very distracting and just didn't allow us to go anywhere that required quite time. Marty, I don't think, was ever even aware she was saying "oh, oh, oh."
"Oh, Oh, Oh" eventually evolved into a quite, sort of rhythmic humming. It's not musical; it's more like white noise. I suspect some people might find it a bit bothersome, most are not even aware. I'm the one most attuned to it. I know for a long time I worried about it bothering others. When we went to church one Sunday I cautioned Jimmie, our Minister, not to be offended if Marty started humming. He just looked at me, turned to the congregation and told them if Marty started humming it was okay, given what she had been through. Amen brother, Jimmie helped with the burden.
Today, Marty still hums. Today it rarely bothers me and my family has assured me it really doesn't bother anyone else. When we go to the movies we go early in the afternoon and sit in the front, no one for her to bother but me and I'm actually quite used to it. Unfortunately we probably won't be seeing any stage productions or go to the symphony, but that's okay.
I have grown fond of the sound; it's actually soothing at this point. I think when Marty holds Noah and hums he kind of digs it too, it’s like this low constant noise that is somehow comforting. When Marty's humming I know she is there and doing okay. When Marty is humming I know she is breathing, I know she’s alive. Today, when Marty is humming, I can hum too. It's one more gift from the stroke, it's what she does, and it’s now what we do.
Many stroke patients develop some sort of outward affect, some kind of involuntary verbal or physical symptom as a result of the brain damage. When you think about the damage done to a person's brain cells by the stroke it's not surprising. The stroke simply realigns everything.
When Marty first started recovering from her 2nd stroke she would cry a lot. It wasn't with tears or sobbing or wailing, it was vocal crying. To this day I don't know if this was voluntary, involuntary, conscious or unconscious. She certainly had every reason to cry and she didn't seem to be able to control it. It wasn't 100% of the time, but there was a lot of the crying affect, in particular if her mind wasn't otherwise occupied. I became somewhat desensitized to the whole thing, but it was a very emotional issue for all and could be quite disconcerting to the uninitiated. This lasted for several months and I found myself singing with Marty whenever we went to the Doctor's office to keep her distracted. An occupied mind helped and that wasn't easy.
The crying evolved into, "oh, oh, oh”, a lot of "oh, oh, oh." This was better than the crying but it could be very distracting and just didn't allow us to go anywhere that required quite time. Marty, I don't think, was ever even aware she was saying "oh, oh, oh."
"Oh, Oh, Oh" eventually evolved into a quite, sort of rhythmic humming. It's not musical; it's more like white noise. I suspect some people might find it a bit bothersome, most are not even aware. I'm the one most attuned to it. I know for a long time I worried about it bothering others. When we went to church one Sunday I cautioned Jimmie, our Minister, not to be offended if Marty started humming. He just looked at me, turned to the congregation and told them if Marty started humming it was okay, given what she had been through. Amen brother, Jimmie helped with the burden.
The only time it has ever been an issue was when we went to hear Ann LaMotte speak at the First Presbyterian Church in Dallas. Ann LaMotte was one of Marty's favorite authors. The daughter of good friend from our church had arranged to get us tickets knowing how much Marty loved LaMotte. This was really one of our first big kinds of outings. Our friend arranged for seating for us at the back and we were enjoying LaMotte’s readings and discussion with Marty doing her humming when a lady assisting with the program tapped me on my shoulder and said Marty was bothering the people around us. If that happened today I would tell her to kiss off, back then, I was apoplectic. I know it's ridiculous, but I was embarrassed for me and for Marty and for the rest of the program kept trying to keep her quite, she tried so hard and the latter part of the program was pretty much ruined.
Today, Marty still hums. Today it rarely bothers me and my family has assured me it really doesn't bother anyone else. When we go to the movies we go early in the afternoon and sit in the front, no one for her to bother but me and I'm actually quite used to it. Unfortunately we probably won't be seeing any stage productions or go to the symphony, but that's okay.
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