It’s raining again. The roof is still leaking. You better get better. I need you to fix the roof.
Quinn moaned, groaned, coughed and grinded most of last night in bed. It was like you were right there with your post cold cough, groans, coughs and grinding. Quinn seems to have replaced you in our bed. I think most of these symptoms are related to the after affects of his virus last week. But, I plan to call the doctor and see about an appointment, to be safe.
I play the conservation that we would have had through my mind about Quinn’s condition. You would have said “Call the doctor”, I would have said, “Let’s wait a few days – I don’t to use antibiotics without good cause.” … I think I will defer to your judgement and call the doctor. I don’t want anything Quinn has to interfere with you and your recovery.
I get to you later in the morning then usual. Mum had an appointment with one of her doctors at 9:40 in the QE2 – but it took so-o-o long. I came up to see you while she had some xrays taken. You were awake. You seemed happy to see me. You said “I love you” loud and clear. It made my heart sing.
I get out some cream and rub your feet. I’m still working on your peeling calluses. You seem to enjoy this. I massage your right leg.
While I massage your feet, Lea and her mother from the church came to visit briefly. Lea had talked to me almost a month ago, shortly after your stroke, and told me of a very vivid dream that she had about you. It was a good dream. It gave her hope. She gave me hope.
Lea is almost 4 months pregnant and really starting to show. I tease her (and you) about dreaming of you while carrying another man’s baby. We all know that if you could, you would have had a very smart comeback. We all laugh at the thought.
After they leave, I had to go and collect Mum from her xray and take her back to her doctor to discuss the findings. You asked me “Don’t go yet.” I stay a little longer.
On the days that I come to Halifax, as soon as my feet hit the floor in the morning, I can’t wait to get to your room. I feel anxious about not seeing you. I think it’s because I realized over the past 38 days, that before the stroke I had been taking your presence for granted.
I know there were days when you would come home from the church and I would say I something like “Oh you’re home”, blandly stating the obvious. I haven’t reached up to kiss you or even hug you much lately … in fact – I probably haven’t even smiled at you… I took you for granted. Like most interactions that happen in one’s life – basic things like oxygen, food, toilet paper – One tends to take them for granted until they aren’t there. (NB You are a lot more important to my existence then toilet paper.)
I pray that the good of this situation, for me, will be that I never take you for granted again.
Along your hairline of your right side of your head is your scar. At first it was an unpleasant reminder of your stroke. Now, I shall think of it differently. I will no longer think ‘Stroke’ when I see your scar, I will think ‘Stroke of Luck’. I think of how lucky we are to still have you … all of you.
When I get back with Mum in tow, your parents are here, Marion or DeeDee and Dick. (Since the children were born I’ve always called Marion, DeeDee.) They had arrived yesterday from Ottawa. The last time they saw you, you were in ICU with the 13 wires and tubes coming out of your body. You have changed since then – lost tubes and weight.
Dick says that when you first saw them, you asked “How are you?” – Those three small words have already has made their visit worthwhile. It doesn’t take much for people to feel connected to you. And yet, I’ll bet saying those three words took a lot of mental and physical energy.
Juanita, Maddie and Farley were here too to drive Mum back to Truro. You were interested in Farley. After he was nursed, Juanita lay him beside you nestled in the crook of your right arm. You looking pleased to snuggle with him and he had the ‘milk drunk’ look of contentment on his face. I wished I had my camera.
We get you in a wheel chair and wheel you around the floor. We settle in one of the two patient lounges. You sleep and we talk about you. Maddie is interested in you but still a little apprehensive. She sat on my knee and coyly played with your fingers of your left hand. You wake up and start to try to interact. You tried to get her to give you a high five – no luck.
When we were in Newfoundland, last summer with Maddie. You and Maddie spent lots of time playing a game. You would slowly circle your finger in the air in a spiral fashion centering onto Maddie’s tummy. When you made contact with her tummy you would make an odd sounding ‘squawk’ with your throat.
When the high five didn’t engage Maddie’s interest today, you reverted to what you knew would work. You slowly circled your finger in the air and started to center it onto her tummy. As you made contact, I make the ‘squawk’ sound for you. This thrilled Maddie and in an instant your relationship was renewed.
Before I left the hospital, I talked to Theresa, the charge nurse, about your pain and lack of sleep. She said she’d push for some more pain management with acetaminophen and ibuprofen. Hopefully pain management will help with getting a restful sleep.
I also asked if it was possible to get into a quieter room. Possibly, you can room with someone with similar issues as you. It has been very frustrating trying to listen to you. As you muster the mental energy to talk, someone else in the room would cough or groan or talk or an alarm would sound or a squeaky cart would roll by. A-a-augh-h-h! The timing of these noises seemed to correspond with your efforts to talk almost 100% of the time. A room change to a quieter room could help sleep and communication.
On the way home, I get a phone call. Quinn didn’t feel up to his gymnastics again this afternoon. I am definitely calling the doctor. He is at Ann’s home. He likes going to Ann’s after school. When I went to pick them up they were they were eating dinner. I am enthusiastically informed that Ann is a very good cook and I could learn a few things from her! While Ann and I talked, the children finish eating and then hide.
Ann and I play hide and seek with the kids. We found them hiding under the stairs with Quinn wearing a gorilla suit and Tara in a caterpillar costume along with Hannah in a superman outfit. The children really love going to friends houses after school.
We get home and there is a letter in the mailbox from New York. Actually from Cooperstown, New York. No it wasn’t from Rod Carew. It’s from a good friend, Terri. She had been following your story and decided that she would go to Cooperstown – site of the Baseball Hall of Fame - on a pilgrimage for you.
She decided to go on Sept 29th because … well you know – just because it’s the 29th. She bought a ticket and after hearing your story, they actually gave her the ticket! It had been raining but at one point the sun came out and she saw a rainbow! The work of faeries? Terri wonders.
I looked back in the journal to see what you were doing at that time. Sept 29, late in the afternoon. You were working with Elaine and she asked you “Are you going to work hard to get better?” You said, “YES”. You said yes with as much enthusiasm as you could muster. I think Terri is right there is some magical force at work here and we are only seeing the beginning.
Every day there are little gifts of words and actions from our friends that continue to help make us strong and keep us having faith.
Tuesday, October 6, 2009
Monday, October 5, 2009
Sunday October 4 – Looking for Time and Your Left
I had a good sleep. I was awake at 6 AM and started to write. My mind is much clearer and my thoughts more organized after a good night’s sleep. I can even process some of the feelings I had when I talked with Dr. Walling. I know he was just trying to help me and give me the benefit of his experience.
I knew your recovery would take time but I did need to hear that it would take time … lots of time from him. He made it more real and now I have time frame. I won’t hold him to the 6 months to 2-year period but at least I have an actual number to work with and you can have your expectations too.
You are restless in the morning. I ask Kari, today’s nurse, what she thought. She said you didn’t sleep well last night. She said it was discussed with the doctors and you will start on a sedative at bedtime to try to help.
Apparently, brain injured patients have a hard time getting used to time passing. I had a sense of this, which is why we got you the clock and white board to keep track of the days. It seems that all that sleep, you had in those early days, has messed up your natural circadian rhythm. I am glad your bed is next to the window. This may help get you oriented to the day. Artificial light probably wouldn’t help.
You are quite alert when we were with you. The children notice your voice is stronger. I think that’s because it’s still early in the day. I’ve noticed the best talking is when you are rested.
As a family we all practice tongue and lip exercises. You looked in a mirror to help your efforts. I hope the face you saw didn’t scare you. You have improved your lip and tongue skills. Tara, Quinn and I decide that, as a reward, you should have your golden chain back with the golden 29, the Saint Christopher medal and Janice’s Cross (which was blessed by a priest.)
I explain the Tara and Quinn that, to swallow, you must close your lips. Tara and Quinn start to experiment to disprove the theory. After a lot of facial contortions, they actually do figure out how to swallow without their lips closed … it’s not easy and looks a little odd. I picture them explaining to their classmates at school resulting in tables of kids, at lunch, all trying to swallow with their lips apart!
I ask if you want me to brush your teeth. You say “Yes”. You proceed to take the toothbrush from me and brush them yourself! Your teeth got a good vigorous brushing. That must have felt so good. We get you in the chair and wheel you around the floor for a change of scenery. That wore you out and you fell asleep.
We go get some lunch and then we head back to Mary and Stuart’s home. Andrea had offered to baby-sit them. I hand over the treasure I was saving for them: “ET” DVD that Sarah (one of Chris’ many childhood friends) had sent us and. ‘Bendaroos’ ( a craft toy). They were happy with their afternoon plan.
I went back to the hospital, to sit by your side. You were sleeping. I dare not wake you. Occasionally, you got restless but then you settled as soon as I touched your leg. Then, you went back to sleep. As you sleep, your right hand gets restless against the restraint. Your right hand finds your left hand. You entwine the fingers of your right with that of your left. Like young lovers might. I hope that by finding your left hand, it’s a sign your brain wants it back.
When you woke up, we talk quietly. You ask “Why didn’t you die.” I try to explain your miracle. You are quiet. I think you need time to come to terms of an answer like that.
I get back to the children and watch to last 25 minutes of ET with them. I’ve not seen ET before. As I watch the tail end of it, I wonder if Sarah choose it for a reason. ET could be a metaphor for you … A stranger trapped in a world that doesn’t understand him and only love allows ET to live. Have all the signs we’ve been getting – your way of ‘calling home’?
As we drive home, Dr. Walling calls to say the your left hip Xray shows a little arthritis. He feels it’s not enough to cause you significant pain. He says that the pain is probably a result of being in a bed for so long. He thinks it will get better with time. I have to admit, in my estimation as a woman, I have always felt that men have significantly lower pain thresholds. Childbirth would probably kill the average guy. I rest my case on you.
It may seem obvious to people who write journals, but to me, I feel I have discovered a way to find meaning from the day. Each day and every day. It forces me to live in the moment. It’s interesting how your journey is teaching me new things about myself.
Chris, I hope that if you take over writing your story, you will also find meaning in each day. Each day of your recovery will have challenges, triumphs and frustrations. Each day will be a measure of your determination to get better. Each day will inspire you to continue.
I knew your recovery would take time but I did need to hear that it would take time … lots of time from him. He made it more real and now I have time frame. I won’t hold him to the 6 months to 2-year period but at least I have an actual number to work with and you can have your expectations too.
You are restless in the morning. I ask Kari, today’s nurse, what she thought. She said you didn’t sleep well last night. She said it was discussed with the doctors and you will start on a sedative at bedtime to try to help.
Apparently, brain injured patients have a hard time getting used to time passing. I had a sense of this, which is why we got you the clock and white board to keep track of the days. It seems that all that sleep, you had in those early days, has messed up your natural circadian rhythm. I am glad your bed is next to the window. This may help get you oriented to the day. Artificial light probably wouldn’t help.
You are quite alert when we were with you. The children notice your voice is stronger. I think that’s because it’s still early in the day. I’ve noticed the best talking is when you are rested.
As a family we all practice tongue and lip exercises. You looked in a mirror to help your efforts. I hope the face you saw didn’t scare you. You have improved your lip and tongue skills. Tara, Quinn and I decide that, as a reward, you should have your golden chain back with the golden 29, the Saint Christopher medal and Janice’s Cross (which was blessed by a priest.)
I explain the Tara and Quinn that, to swallow, you must close your lips. Tara and Quinn start to experiment to disprove the theory. After a lot of facial contortions, they actually do figure out how to swallow without their lips closed … it’s not easy and looks a little odd. I picture them explaining to their classmates at school resulting in tables of kids, at lunch, all trying to swallow with their lips apart!
I ask if you want me to brush your teeth. You say “Yes”. You proceed to take the toothbrush from me and brush them yourself! Your teeth got a good vigorous brushing. That must have felt so good. We get you in the chair and wheel you around the floor for a change of scenery. That wore you out and you fell asleep.
We go get some lunch and then we head back to Mary and Stuart’s home. Andrea had offered to baby-sit them. I hand over the treasure I was saving for them: “ET” DVD that Sarah (one of Chris’ many childhood friends) had sent us and. ‘Bendaroos’ ( a craft toy). They were happy with their afternoon plan.
I went back to the hospital, to sit by your side. You were sleeping. I dare not wake you. Occasionally, you got restless but then you settled as soon as I touched your leg. Then, you went back to sleep. As you sleep, your right hand gets restless against the restraint. Your right hand finds your left hand. You entwine the fingers of your right with that of your left. Like young lovers might. I hope that by finding your left hand, it’s a sign your brain wants it back.
When you woke up, we talk quietly. You ask “Why didn’t you die.” I try to explain your miracle. You are quiet. I think you need time to come to terms of an answer like that.
I get back to the children and watch to last 25 minutes of ET with them. I’ve not seen ET before. As I watch the tail end of it, I wonder if Sarah choose it for a reason. ET could be a metaphor for you … A stranger trapped in a world that doesn’t understand him and only love allows ET to live. Have all the signs we’ve been getting – your way of ‘calling home’?
As we drive home, Dr. Walling calls to say the your left hip Xray shows a little arthritis. He feels it’s not enough to cause you significant pain. He says that the pain is probably a result of being in a bed for so long. He thinks it will get better with time. I have to admit, in my estimation as a woman, I have always felt that men have significantly lower pain thresholds. Childbirth would probably kill the average guy. I rest my case on you.
It may seem obvious to people who write journals, but to me, I feel I have discovered a way to find meaning from the day. Each day and every day. It forces me to live in the moment. It’s interesting how your journey is teaching me new things about myself.
Chris, I hope that if you take over writing your story, you will also find meaning in each day. Each day of your recovery will have challenges, triumphs and frustrations. Each day will be a measure of your determination to get better. Each day will inspire you to continue.
Sunday, October 4, 2009
Saturday October 3 - Angels in the Middle of No Where
Annie slept in her bed, last night, for the first time in a long time. Since your stroke, Annie has been shadowing us around and playing musical beds depending who needed her the most.
This morning, Quinn slept in. He is still sick. I’m up at 5:30 am and eager to get going for the day. I was worried that he may have Strep. throat. He could have picked it up from a friend of his who had it last week. I make a note to ask the nurses about the risks.
While I wait for Quinn to get up, I retreat Tara’s hair – just to be safe. After the treatment Tara and I have a small battle over, of all things, hair things. Small stuff but she wasn’t budging and neither was I. Tara stomped off to her room in a huff. I let her cool off for a few minutes then just as I was going to try and talk to her, the phone rang. It’s Assieh, “What’s wrong” Her first question – Am I so veneer that she can tell something is up by the way I say “Hello”? She asked again. “Oh, you know sometimes mothers and daughters have rough spots – today we are having a rough spot.” I said.
We talk…actually Assieh talks – I listen. “Just give her a hug and tell her you love her and that you will sort out the problem another time.” I go to Tara and do as instructed and life is good again. I have such wise friends.
I realize that Tara and I will bump heads a lot more as her hormones flow into puberty and mine drain into menopause. We will need you to be the calm voice of reason in our home.
On the car ride we talk about hunting and whether hunters help animals or not. Quinn and Tara have strong opinions on this subject. I’m reminded of your thoughts: “Hunting is only a sport if the deer have guns too”. I try to offer some balancing thoughts that good hunters may be more humane the Mother Nature sometimes. They are quiet and reflect of this.
Tara enjoys the silence because she has just discovered the Magic Tree House series of books and demands complete silence in the car so she can read.
Quinn wonders aloud if Uncle Bill has found a wife yet. “I know he has two girls in Montreal from the fish in the sea.” He said. “I hope he likes them”.
When we get to the airport, Quinn asks are we in the middle of nowhere. I point out that I didn’t see a sign saying ‘No Where’, and if we where – I wasn’t sure where the middle would be. “Well, I think we ARE in the middle of No Where.” He says.
I sometimes feel that he is right – We are in the middle of No Where. This marathon hasn’t got mileage markers. The result is, you have no idea where you are. Did we just cross the start line or are we 1 or 5 or 10 km into it? It would be nice to know where we are. We are not at the beginning and we are certainly not at the end… so I guess that means we are in the middle of ‘No Where’. A tough place to be.
When we get to the hospital, you are awake and quite responsive. You have left sided finger tone and your left leg lifted up a little. You asked how the Angels were doing! You had taken out your NG tube again because someone forgot to put on the restraints. Not me this time.
I showed you some pictures that Norris (fellow runner) had taken on the Walk for Hope night. I explained what happened that night. I told you how Jay had spoke to the crowd and asked them, as they walk or run, to pray for you and send positive thoughts and energy to you after every 29 steps. I think you smiled.
Richard and Lena visit for a little while. They brought some goodies from the RumRunners Relay. They had a T -shirt from the Walk for Hope. The shirt had over 200 signatures on it showing support for you. Many of the runners ran with little signs saying: ‘I Run For Hope Supporting Chris Cashen’. When they told you this, I could really see your face contort a little into a smile this time. That was so nice to see.
After they left, you got restless with you right leg. I couldn’t tell what your concern was. It’s very frustrating. There are moments of good communication and then I can’t figure out what you are saying. I know you are frustrated. So am I.
I talk to the charge nurse, Missy. She’s very nice, and shows me you chart. The urology consult happened yesterday! They added another drug to your mix that, in time, should help your urine flow. The UTI seems to be resolving.
Missy gives me a handout that outlines your care and who is responsible for what along with their phone numbers. This information is great, It’s too bad it took 2 weeks to get it to me. That would have saved some anxiety for me and your parents.
My anxiety stems from the fact that I know enough to know of all sorts of things that could go wrong and not enough to know that, with time, a lot of things will go right.
The phone rings. It’s Steve. (Chris’ brother from Ottawa) He says how you are doing and tells me that they had just booked tickets for your parents to fly down on Monday. Steve and Laura are planning to come down a little later in the month. Steve talks to you briefly, you listen and move your lips but I can’t tell what you are trying to say to Steve.
Dr Walling visits and tells me that it’s just a UTI. Don’t stress on that. These things happen and we are only “one kilometer along in the marathon”. “Your job” he says, “is to be a wife and a mother – that’s should be your priority. Give your children as normal life as you can and be there for Chris, but don’t get worried about an UTI.”
Dr. Walling advises me that I have to pace myself. We can expect changes for improvement for 6 months to 2 years. It’s such a long time. Two years is almost 25% of Quinn’s lifetime. So much happens with children at this age.
I have to agree that he gave sound advice. But I believe that I’m doing a pretty good job of that. I restated my concern. Nobody told me about the UTI and yet the urology consult that was requested 10 days ago was only acted on now. It seems odd that the day I call the patient liaison, Karen, and express my concerns, is the day the urology consult was done.
Dr. Walling is a quiet and thoughtful man. Hehas a very calming bedside manner. But I felt like he talked to me like a child – giving me instructions about my personal life rather then just addressing my concerns. I just wanted to be kept in the loop. I want to know how you are doing. I can see and measure the small changes myself. These changes give me faith that there will be more improvement in the days and weeks to come. It’s the silent big changes that scare me. That’s the sort of thing that got you in the hospital in the first place – the unidentified ‘critical hypertension’. The unknowns are the scary parts – not what I can see.
We go to dinner, Tara makes a wish in the fountain after dinner with a penny she found. I didn’t ask her wish I just silently wished her wish came true.
We go to the Commons play-park after dinner. They are setting up for the ‘Run for the Cure’ event. There strings of bras decorating the fencing. Hundreds of bras. Tara likes the turquoise one with gold swirls on it the best. I was waiting for the question – When can I wear a bra? But she didn’t ask … thankfully – I don’t want her to grow up until you are home. We play on the play ground equipment.
We get back to your room. You are still in your chair but sleepy. We visit for a short while, but Tara and Quinn are coughing everywhere. The cold air has irritated their throats. It’s time for an early bed if we are going to chase this cough away.
We go to Lenore’s apartment. Unfortunately, the keys that the office gave me earlier today, were not the right keys! We were locked out. I was tired and a little deflated after my talk with Dr. Walling. “Six months to two years” keeps running through my head. I start to weep. “We’ll just have to go home – we have no place to stay.” Tara looks at me and says “Mummy, you can’t drive home – it’s not safe, maybe the neighbors will have a key?” She suggests, applying her knowledge of small neighborhoods to a city apartment building. “We need a plan B”. She says.
I start thinking about getting a hotel room for the night. We load all our things back into the car and I remember a name that Janice from PEI gave me. Her cousin lives very near the hospital. She had given me her phone number.
I had never met Mary and Stuart, but as soon as I called and identified myself, Mary immediately asks “Where are you now?” Without and hesitation, she gave me directions to their home. I am touched beyond words at the open arms to us.
We talk for a little while. It turns out that they lived in Ottawa a few times. Tara and Quinn seem very comfortable in their home. They sleep in 15 year old Andrea’s bedroom. Tara’s eyes light up at all the interesting things in her room. I think she has found another older friend. Quinn is thrilled to be sleeping on a mattress on the floor. “It’s like camping”. Cough syrup and teeth brushed and they went off to sleep.
I am tired. I try to write in the journal but I keep dozing off. I give up and go to sleep. A restorative sleep.
I dreamt about Angels in the middle of No Where. The Angels looked a lot like Assieh,Mary and Stuart.
This morning, Quinn slept in. He is still sick. I’m up at 5:30 am and eager to get going for the day. I was worried that he may have Strep. throat. He could have picked it up from a friend of his who had it last week. I make a note to ask the nurses about the risks.
While I wait for Quinn to get up, I retreat Tara’s hair – just to be safe. After the treatment Tara and I have a small battle over, of all things, hair things. Small stuff but she wasn’t budging and neither was I. Tara stomped off to her room in a huff. I let her cool off for a few minutes then just as I was going to try and talk to her, the phone rang. It’s Assieh, “What’s wrong” Her first question – Am I so veneer that she can tell something is up by the way I say “Hello”? She asked again. “Oh, you know sometimes mothers and daughters have rough spots – today we are having a rough spot.” I said.
We talk…actually Assieh talks – I listen. “Just give her a hug and tell her you love her and that you will sort out the problem another time.” I go to Tara and do as instructed and life is good again. I have such wise friends.
I realize that Tara and I will bump heads a lot more as her hormones flow into puberty and mine drain into menopause. We will need you to be the calm voice of reason in our home.
On the car ride we talk about hunting and whether hunters help animals or not. Quinn and Tara have strong opinions on this subject. I’m reminded of your thoughts: “Hunting is only a sport if the deer have guns too”. I try to offer some balancing thoughts that good hunters may be more humane the Mother Nature sometimes. They are quiet and reflect of this.
Tara enjoys the silence because she has just discovered the Magic Tree House series of books and demands complete silence in the car so she can read.
Quinn wonders aloud if Uncle Bill has found a wife yet. “I know he has two girls in Montreal from the fish in the sea.” He said. “I hope he likes them”.
When we get to the airport, Quinn asks are we in the middle of nowhere. I point out that I didn’t see a sign saying ‘No Where’, and if we where – I wasn’t sure where the middle would be. “Well, I think we ARE in the middle of No Where.” He says.
I sometimes feel that he is right – We are in the middle of No Where. This marathon hasn’t got mileage markers. The result is, you have no idea where you are. Did we just cross the start line or are we 1 or 5 or 10 km into it? It would be nice to know where we are. We are not at the beginning and we are certainly not at the end… so I guess that means we are in the middle of ‘No Where’. A tough place to be.
When we get to the hospital, you are awake and quite responsive. You have left sided finger tone and your left leg lifted up a little. You asked how the Angels were doing! You had taken out your NG tube again because someone forgot to put on the restraints. Not me this time.
I showed you some pictures that Norris (fellow runner) had taken on the Walk for Hope night. I explained what happened that night. I told you how Jay had spoke to the crowd and asked them, as they walk or run, to pray for you and send positive thoughts and energy to you after every 29 steps. I think you smiled.
Richard and Lena visit for a little while. They brought some goodies from the RumRunners Relay. They had a T -shirt from the Walk for Hope. The shirt had over 200 signatures on it showing support for you. Many of the runners ran with little signs saying: ‘I Run For Hope Supporting Chris Cashen’. When they told you this, I could really see your face contort a little into a smile this time. That was so nice to see.
After they left, you got restless with you right leg. I couldn’t tell what your concern was. It’s very frustrating. There are moments of good communication and then I can’t figure out what you are saying. I know you are frustrated. So am I.
I talk to the charge nurse, Missy. She’s very nice, and shows me you chart. The urology consult happened yesterday! They added another drug to your mix that, in time, should help your urine flow. The UTI seems to be resolving.
Missy gives me a handout that outlines your care and who is responsible for what along with their phone numbers. This information is great, It’s too bad it took 2 weeks to get it to me. That would have saved some anxiety for me and your parents.
My anxiety stems from the fact that I know enough to know of all sorts of things that could go wrong and not enough to know that, with time, a lot of things will go right.
The phone rings. It’s Steve. (Chris’ brother from Ottawa) He says how you are doing and tells me that they had just booked tickets for your parents to fly down on Monday. Steve and Laura are planning to come down a little later in the month. Steve talks to you briefly, you listen and move your lips but I can’t tell what you are trying to say to Steve.
Dr Walling visits and tells me that it’s just a UTI. Don’t stress on that. These things happen and we are only “one kilometer along in the marathon”. “Your job” he says, “is to be a wife and a mother – that’s should be your priority. Give your children as normal life as you can and be there for Chris, but don’t get worried about an UTI.”
Dr. Walling advises me that I have to pace myself. We can expect changes for improvement for 6 months to 2 years. It’s such a long time. Two years is almost 25% of Quinn’s lifetime. So much happens with children at this age.
I have to agree that he gave sound advice. But I believe that I’m doing a pretty good job of that. I restated my concern. Nobody told me about the UTI and yet the urology consult that was requested 10 days ago was only acted on now. It seems odd that the day I call the patient liaison, Karen, and express my concerns, is the day the urology consult was done.
Dr. Walling is a quiet and thoughtful man. Hehas a very calming bedside manner. But I felt like he talked to me like a child – giving me instructions about my personal life rather then just addressing my concerns. I just wanted to be kept in the loop. I want to know how you are doing. I can see and measure the small changes myself. These changes give me faith that there will be more improvement in the days and weeks to come. It’s the silent big changes that scare me. That’s the sort of thing that got you in the hospital in the first place – the unidentified ‘critical hypertension’. The unknowns are the scary parts – not what I can see.
We go to dinner, Tara makes a wish in the fountain after dinner with a penny she found. I didn’t ask her wish I just silently wished her wish came true.
We go to the Commons play-park after dinner. They are setting up for the ‘Run for the Cure’ event. There strings of bras decorating the fencing. Hundreds of bras. Tara likes the turquoise one with gold swirls on it the best. I was waiting for the question – When can I wear a bra? But she didn’t ask … thankfully – I don’t want her to grow up until you are home. We play on the play ground equipment.
We get back to your room. You are still in your chair but sleepy. We visit for a short while, but Tara and Quinn are coughing everywhere. The cold air has irritated their throats. It’s time for an early bed if we are going to chase this cough away.
We go to Lenore’s apartment. Unfortunately, the keys that the office gave me earlier today, were not the right keys! We were locked out. I was tired and a little deflated after my talk with Dr. Walling. “Six months to two years” keeps running through my head. I start to weep. “We’ll just have to go home – we have no place to stay.” Tara looks at me and says “Mummy, you can’t drive home – it’s not safe, maybe the neighbors will have a key?” She suggests, applying her knowledge of small neighborhoods to a city apartment building. “We need a plan B”. She says.
I start thinking about getting a hotel room for the night. We load all our things back into the car and I remember a name that Janice from PEI gave me. Her cousin lives very near the hospital. She had given me her phone number.
I had never met Mary and Stuart, but as soon as I called and identified myself, Mary immediately asks “Where are you now?” Without and hesitation, she gave me directions to their home. I am touched beyond words at the open arms to us.
We talk for a little while. It turns out that they lived in Ottawa a few times. Tara and Quinn seem very comfortable in their home. They sleep in 15 year old Andrea’s bedroom. Tara’s eyes light up at all the interesting things in her room. I think she has found another older friend. Quinn is thrilled to be sleeping on a mattress on the floor. “It’s like camping”. Cough syrup and teeth brushed and they went off to sleep.
I am tired. I try to write in the journal but I keep dozing off. I give up and go to sleep. A restorative sleep.
I dreamt about Angels in the middle of No Where. The Angels looked a lot like Assieh,Mary and Stuart.
Friday October 2 – Life at Home
Last night, Quinn ground his teeth a lot. I would gently elbow him to stop – he kept up the ‘cud chewing cow’ imitation all night … or so it seemed. Is this because of his sickness or is it because of your sickness? Maybe it’s something kids do when new teeth come in. We all have a dentist appointment this month. I must remember to ask about it.
Karen, the patient liaison, called. I explained my concerns about the communication breakdown and my frustration with getting no urology consult and how I believed that possibly if the urology consult use done earlier then you might not have had a UTI. She sounds very concern and says that it’s unusual for us to be left hanging. She said she would see if she could set up a family meeting.
Marsha reminded me yesterday that I should be thinking in terms of weeks – a week ago you had your trach tube still – I have to think about trends and not the day to day ups and downs – (Like you said John K)
I start the day in a normal way – walk Annie to work – she remembers the way and stops at all the best smell spots.
Annie’s life has changed. She is used to getting a lot of walking time and attention from me. This past month she has had minimal attention. Her response: one BM in the house (I think I forgot to put her outside that night before bed – that was early in the marathon) and a few things chewed. If I give her a rawhide just before I leave in the morning, she seems more settled.
I have been very relaxed about Annie’s sleeping quarters. In the early days, I didn’t sleep and Annie would follow around and watch over me. Then as the days progressed to weeks, I let Annie on our bed because I felt guilty about her being ignored. But Annie, like the cats, hogs the bed and I don’t get a good night sleep. I’ve got to try to claim back our bed from children and animals.
I have been worried about Himmy. Whenever I get up in the middle of the night, he spends a solid few minutes drinking. This is unusual for a cat. Drinking a lot can mean all sorts of problems. Val and I pick him up from the house and I take him to work. I check him over and check his urine – everything is OK – nothing wrong – I guess I’m just being paranoid after poor Scroggins died.
Children have been invited to join a Friday evening youth group. This was their first time there. Karen and her children take them. They had a good time. Some Fridays they won’t be able to go but it sounds like it is a fun and a healthy environment. It also frees me up to do those little odd jobs like groceries stock up on pellets and tidy the garage etc.
My back is sore now after stocking half the winter’s worth of pellets for the stove. Now that’s done, I can get the garage organized and store the van.
About six months ago, I learned a new trick from Quinn. Whenever you ask him casually, “How are you doing?” He would answer with an enthusiastic “I’m great.”
Actually, it wasn’t just ‘great’, he would say ‘GR-R-eat!” with lots of positive energy and force. I love asking him – “How are you?”- Because I loved to hear his answer, especially on those days when I didn’t feel so great.
When I hear him say it – I would start to feel better. His joy over life was and is contagious. Maybe this is because of the good vibes he gives off really are contagious or maybe because he’s our son. I’d like to think it’s the good vibes.
One day, while I was walking Annie. I was thinking about Quinn’s GR-R-eat and decided that from then on whenever anyone asked me – How are you? – I would reply like Quinn. I would say “I’m GR-R-eat”. No matter how I really felt – because by saying it made me realize that I really do have a lot of great and good things in my life and I could make someone else feel a little better about their life.
Most of this year, whenever someone asked me how I am. I said “I’m GR-R-eat” and I would smile. I don’t know if it helped other people but I felt it helped me. Everytime I’d said it – it felt like a little Thank You to God and it made me feel better.
The other day, I was asked the question. My mouth started to say great – because I had trained my self – but the words came out different. Come to think of it – I don’t think I’ve heard Quinn say it recently either.
The first week you were in hospital I thought I would never say ‘I’m GR-R-eat’ again.
Now, I think I will. I just don’t know when. Maybe when we can really talk and start sharing our lives again.
Karen, the patient liaison, called. I explained my concerns about the communication breakdown and my frustration with getting no urology consult and how I believed that possibly if the urology consult use done earlier then you might not have had a UTI. She sounds very concern and says that it’s unusual for us to be left hanging. She said she would see if she could set up a family meeting.
Marsha reminded me yesterday that I should be thinking in terms of weeks – a week ago you had your trach tube still – I have to think about trends and not the day to day ups and downs – (Like you said John K)
I start the day in a normal way – walk Annie to work – she remembers the way and stops at all the best smell spots.
Annie’s life has changed. She is used to getting a lot of walking time and attention from me. This past month she has had minimal attention. Her response: one BM in the house (I think I forgot to put her outside that night before bed – that was early in the marathon) and a few things chewed. If I give her a rawhide just before I leave in the morning, she seems more settled.
I have been very relaxed about Annie’s sleeping quarters. In the early days, I didn’t sleep and Annie would follow around and watch over me. Then as the days progressed to weeks, I let Annie on our bed because I felt guilty about her being ignored. But Annie, like the cats, hogs the bed and I don’t get a good night sleep. I’ve got to try to claim back our bed from children and animals.
I have been worried about Himmy. Whenever I get up in the middle of the night, he spends a solid few minutes drinking. This is unusual for a cat. Drinking a lot can mean all sorts of problems. Val and I pick him up from the house and I take him to work. I check him over and check his urine – everything is OK – nothing wrong – I guess I’m just being paranoid after poor Scroggins died.
Children have been invited to join a Friday evening youth group. This was their first time there. Karen and her children take them. They had a good time. Some Fridays they won’t be able to go but it sounds like it is a fun and a healthy environment. It also frees me up to do those little odd jobs like groceries stock up on pellets and tidy the garage etc.
My back is sore now after stocking half the winter’s worth of pellets for the stove. Now that’s done, I can get the garage organized and store the van.
About six months ago, I learned a new trick from Quinn. Whenever you ask him casually, “How are you doing?” He would answer with an enthusiastic “I’m great.”
Actually, it wasn’t just ‘great’, he would say ‘GR-R-eat!” with lots of positive energy and force. I love asking him – “How are you?”- Because I loved to hear his answer, especially on those days when I didn’t feel so great.
When I hear him say it – I would start to feel better. His joy over life was and is contagious. Maybe this is because of the good vibes he gives off really are contagious or maybe because he’s our son. I’d like to think it’s the good vibes.
One day, while I was walking Annie. I was thinking about Quinn’s GR-R-eat and decided that from then on whenever anyone asked me – How are you? – I would reply like Quinn. I would say “I’m GR-R-eat”. No matter how I really felt – because by saying it made me realize that I really do have a lot of great and good things in my life and I could make someone else feel a little better about their life.
Most of this year, whenever someone asked me how I am. I said “I’m GR-R-eat” and I would smile. I don’t know if it helped other people but I felt it helped me. Everytime I’d said it – it felt like a little Thank You to God and it made me feel better.
The other day, I was asked the question. My mouth started to say great – because I had trained my self – but the words came out different. Come to think of it – I don’t think I’ve heard Quinn say it recently either.
The first week you were in hospital I thought I would never say ‘I’m GR-R-eat’ again.
Now, I think I will. I just don’t know when. Maybe when we can really talk and start sharing our lives again.
Saturday, October 3, 2009
Thursday October 1 Healing vs Treatment
I get up early. I anxious to see you and see how you did yesterday. I was thinking about the medical community and how it’s not really rewarded for healing. No, physicians and nurses are rewarded of treating patients. There is a difference. Healing involves the patient and requires a good relationship between medical care-giver and patient. Treatment is an act done to you. I think, there are times when life in a hospital gets so busy that the staff forget they are in the healing business, not the treatment business.
The other problem is that with the fast life of a teaching hospital, a patient can lose their identity. You are not known as Chris Cashen, husband, involved father, loyal friend, serious runner, funny guy, wood worker plus all the other hats you wear. You are known as the “45 year old male with idiopathetic critical hypertension that caused a significant hemorrhagic stroke of the right basal ganglia” … in bed 2.
They define you by your disease, the latest chapter in your biograghy, not by the whole book. It’s easier perhaps for the medical staff to think of you this way – but I don’t think it leads to good healing.
A relationship between patient and healer is fundamental for the best outcome. Without that bond there is an only a veneer of trust. Without a good level of trust, healing can not be complete. No wonder alternate medical practices are becoming more popular – people need people to heal … not treatments.
Family and friends play a role here. In your case, where there is no real relationship between you and your doctor, the doctor needs to develop that relationship with your support group … US. Since you were moved out of the stepdown intermediate care unit, I haven’t felt a realtionship.
OK, I guess I have finished venting now.
You are sharing a room with 2 other patients. It’s noisier and I haven’t seen a nurse yet. It’s 9am. The fan is on you. Courtney, the nurse, says your temperature is 37.4 – just below an actual fever. I wonder if it’s because if the urinary tract infection.
Physio Steve and Jill get you sitting up you are almost sitting without much help and you are lifting your head much better then 2 days ago. You are even looking around the room.
That maybe the advantage of missing a day with you – I see bigger changes.
We talk – actually I talk, you listen. Periodically, you try to talk but most of the time I can’t hear what you say. The odd time, when your voice is louder, the lady in the next bed who snores muffles it! It’s very frustrating for both of us.
We do some lip and tongue exercises – it wasn’t as much fun as it sounds. You actually have improved your tongue strength from Tuesday and you can even little puff sounds with your lips.
I brush your teeth and put some cream on your feet. You seem to enjoy this especially your right foot. The calluses are all starting to peel off leaving behind soft baby-butt like skin. Some women pay big bucks to exfoliate like that!
Your left hip is very sore. I suggest it’s because you have been recumbent for so long. Jill thinks not. “He’s too sore for that reason. The hip xray from yesterday didn’t show anything so some more xrays will be taken to look at the spine and pelvis.”
You seem restless, your right leg is constantly moving – I suddenly clue in. “Do you have to pee? Is that why your leg is so restless?” Vigorous Thumbs up. I go to find a nurse but before I leave, I ask you not to touch your NG tube so I don’t have to put on your restraints. I believe you nodded.
I go find a nurse and come back to you – I’m gone, maybe 3 minutes, and you pulled out your NG tube. Oh Gosh. I can’t trust you right now. I know you are sick of the tube – I try to explain that it is your only source of food and you need it.
The nurse comes and places a catheter – your face doesn’t show it – but I feel the relief. Within minutes of finishing the job you fall asleep.
In the video I saw Tuesday about Jason, the musician, the lack of facial expression after his recovery bothered me. Facial expression is such a big part of communication. I guess we can live with an emotionless face but it will be hard to get used to. On the other hand it might enhance your dry deadpan delivery when you being funny.
Physio Elaine is back to work your arm. You were still sleeping when she came – so you were a little goggy. She worked with your arm and tried to get you to look left. You were sleepy.
Shortly after Elaine left, Sue the speech therapist came in. You are a little brighter for her. She talked with you about how to communicate. She was trying to find the best way. You liked the thumbs up, thumbs down approach. She shows you a paper with the alphabet on it and asks you to spell your name. You start out strong: C…H…then you pause and hoover over the R then point to the S and then the I. She asks if you can see the board well – you gesture so-so with your hand. “Is it difficult to think how to spell?” Thumbs up.
We discuss what would help. She suggested that cue words might help. You may not be able to think how to spell – but you might be able to still read. We test you with Tara and Quinn’s names. You identify the right name to the word. This might work. I start making a list of cue words: Pee, Poop, Headache, Heartburn, Pain, Back, Shoulder, Hip, Knee Left, Right, Chair, Bed, Mouth Dry and Tired.
I leave the disability papers with the nurses for the doctor to fill out and sign. As I pack up to leave the nurses are putting back the NG tube. I’m sorry Chris – I won’t mention the NG tube again – just keep practicing your lip and tongue exercises and maybe we can get rid of it.
Marsha got me the phone number of the patient liaison for the hospital. I called and left a message to call me.
We get back from our third music lesson with Chella. Quinn’s enthusiasm is starting to fade. Hopefully it’s because he is still not well.
I return some dishes our neighbors, Harold and Leslie. Harold is also recovering from a stroke and helps me understand what things are like from your side. He tells me of a Stroke club that’s in Truro. They meet very regularly and act as a support group and resource for information. There is even some gym time to help you with your recovery. I know that this is a peak into the future but it is good to know there is local help.
The kids are in bed. I decide to tackle your room, the man-cave. I want to find the charger for your ipod. I start to tidy up. Your room seems empty and lonely.
The day we first saw our house I remember well. Sandy, the real estate agent, said after showing us a house we weren’t too thrilled with. “I do have other house. It’s not listed yet but it’s in the area you are looking.” We went to see it. You were interested. As we toured the house, I was thinking “Ohh it’s so dark” – I like the sun and sunny windows – it was too dark I found it hard to breath. I didn’t like the house.
You did. The more we toured – the more you liked it. And when you saw the ‘extra’ room downstairs – I think you fell in love. You envisioned immediately how that room could be your space. You were sold.
It took a little time and some convincing to bring me around. And I have to admit that the large lot size was very attractive to me. I could envision immediately how that could be my space.
Thanks to you we found our home and I love it now … We just need you back in it for it to feel full and lively again.
I never did find your ipod charger … maybe … soon you can tell me.
The other problem is that with the fast life of a teaching hospital, a patient can lose their identity. You are not known as Chris Cashen, husband, involved father, loyal friend, serious runner, funny guy, wood worker plus all the other hats you wear. You are known as the “45 year old male with idiopathetic critical hypertension that caused a significant hemorrhagic stroke of the right basal ganglia” … in bed 2.
They define you by your disease, the latest chapter in your biograghy, not by the whole book. It’s easier perhaps for the medical staff to think of you this way – but I don’t think it leads to good healing.
A relationship between patient and healer is fundamental for the best outcome. Without that bond there is an only a veneer of trust. Without a good level of trust, healing can not be complete. No wonder alternate medical practices are becoming more popular – people need people to heal … not treatments.
Family and friends play a role here. In your case, where there is no real relationship between you and your doctor, the doctor needs to develop that relationship with your support group … US. Since you were moved out of the stepdown intermediate care unit, I haven’t felt a realtionship.
OK, I guess I have finished venting now.
You are sharing a room with 2 other patients. It’s noisier and I haven’t seen a nurse yet. It’s 9am. The fan is on you. Courtney, the nurse, says your temperature is 37.4 – just below an actual fever. I wonder if it’s because if the urinary tract infection.
Physio Steve and Jill get you sitting up you are almost sitting without much help and you are lifting your head much better then 2 days ago. You are even looking around the room.
That maybe the advantage of missing a day with you – I see bigger changes.
We talk – actually I talk, you listen. Periodically, you try to talk but most of the time I can’t hear what you say. The odd time, when your voice is louder, the lady in the next bed who snores muffles it! It’s very frustrating for both of us.
We do some lip and tongue exercises – it wasn’t as much fun as it sounds. You actually have improved your tongue strength from Tuesday and you can even little puff sounds with your lips.
I brush your teeth and put some cream on your feet. You seem to enjoy this especially your right foot. The calluses are all starting to peel off leaving behind soft baby-butt like skin. Some women pay big bucks to exfoliate like that!
Your left hip is very sore. I suggest it’s because you have been recumbent for so long. Jill thinks not. “He’s too sore for that reason. The hip xray from yesterday didn’t show anything so some more xrays will be taken to look at the spine and pelvis.”
You seem restless, your right leg is constantly moving – I suddenly clue in. “Do you have to pee? Is that why your leg is so restless?” Vigorous Thumbs up. I go to find a nurse but before I leave, I ask you not to touch your NG tube so I don’t have to put on your restraints. I believe you nodded.
I go find a nurse and come back to you – I’m gone, maybe 3 minutes, and you pulled out your NG tube. Oh Gosh. I can’t trust you right now. I know you are sick of the tube – I try to explain that it is your only source of food and you need it.
The nurse comes and places a catheter – your face doesn’t show it – but I feel the relief. Within minutes of finishing the job you fall asleep.
In the video I saw Tuesday about Jason, the musician, the lack of facial expression after his recovery bothered me. Facial expression is such a big part of communication. I guess we can live with an emotionless face but it will be hard to get used to. On the other hand it might enhance your dry deadpan delivery when you being funny.
Physio Elaine is back to work your arm. You were still sleeping when she came – so you were a little goggy. She worked with your arm and tried to get you to look left. You were sleepy.
Shortly after Elaine left, Sue the speech therapist came in. You are a little brighter for her. She talked with you about how to communicate. She was trying to find the best way. You liked the thumbs up, thumbs down approach. She shows you a paper with the alphabet on it and asks you to spell your name. You start out strong: C…H…then you pause and hoover over the R then point to the S and then the I. She asks if you can see the board well – you gesture so-so with your hand. “Is it difficult to think how to spell?” Thumbs up.
We discuss what would help. She suggested that cue words might help. You may not be able to think how to spell – but you might be able to still read. We test you with Tara and Quinn’s names. You identify the right name to the word. This might work. I start making a list of cue words: Pee, Poop, Headache, Heartburn, Pain, Back, Shoulder, Hip, Knee Left, Right, Chair, Bed, Mouth Dry and Tired.
I leave the disability papers with the nurses for the doctor to fill out and sign. As I pack up to leave the nurses are putting back the NG tube. I’m sorry Chris – I won’t mention the NG tube again – just keep practicing your lip and tongue exercises and maybe we can get rid of it.
Marsha got me the phone number of the patient liaison for the hospital. I called and left a message to call me.
We get back from our third music lesson with Chella. Quinn’s enthusiasm is starting to fade. Hopefully it’s because he is still not well.
I return some dishes our neighbors, Harold and Leslie. Harold is also recovering from a stroke and helps me understand what things are like from your side. He tells me of a Stroke club that’s in Truro. They meet very regularly and act as a support group and resource for information. There is even some gym time to help you with your recovery. I know that this is a peak into the future but it is good to know there is local help.
The kids are in bed. I decide to tackle your room, the man-cave. I want to find the charger for your ipod. I start to tidy up. Your room seems empty and lonely.
The day we first saw our house I remember well. Sandy, the real estate agent, said after showing us a house we weren’t too thrilled with. “I do have other house. It’s not listed yet but it’s in the area you are looking.” We went to see it. You were interested. As we toured the house, I was thinking “Ohh it’s so dark” – I like the sun and sunny windows – it was too dark I found it hard to breath. I didn’t like the house.
You did. The more we toured – the more you liked it. And when you saw the ‘extra’ room downstairs – I think you fell in love. You envisioned immediately how that room could be your space. You were sold.
It took a little time and some convincing to bring me around. And I have to admit that the large lot size was very attractive to me. I could envision immediately how that could be my space.
Thanks to you we found our home and I love it now … We just need you back in it for it to feel full and lively again.
I never did find your ipod charger … maybe … soon you can tell me.
Thursday, October 1, 2009
Wednesday September 30 –Our first day apart
I had to hold back and wait until 8AM to call the charge nurse. Theresa, the charge nurse came to the phone. I start to explain my concerns and query why has there been no urology consult yet. She says you have a urinary tract infection (UTI) and are being treated for it. No kidding – I knew that was going to happen. Frequent catheterization and urine retention are the perfect conditions for a UTI.
I convey my frustration and said that if the consult occurred last week, perhaps this could have been avoided. She didn’t have a reply for this. I asked when could I expect a consult if you continue not to have bladder control yourself. “Probably Monday” she said. Great I’ll be by your side to see… I hope.
I go to work. I’m still frustrated and I vent to all that will listen. I feel a little better. You always know what to say when I’m upset at things, you would say something funny and it would always relax me immediately – that is a gift you have that I always appreciated..
As I start my day, I noticed an unpleasant smell. I ask Joye and Lisamarie if they smell it. They do but none of us can identify it. I wonder around – trying to find the source. I have to go into my first appointment with the smell. After my second appointment, Lisamarie and Joye noted that the smell vanished when I went into an appointment room and re-appeared when I finished. The smell from was me.
After some investigation, I discovered that, somehow, my freshly washed scrub shirt had been sprayed with a dog’s anal glands and I ended up wearing the smell.
So far my first day back … stinks!
The first two clients share their personal stories with me about their recovery from brain injuries. Lynn described how she resumed a lot of function back in the right side. Her legacy is that her handwriting has changed. Sue explained to me how her sensory input (sight, hearing, feel etc) seemed VERY real to her but it was just her reality not real. Her brain fooled her perception of things.
A little later in the morning, I was asked, by a lovely lady with a cat, if I mediated. I said no but I am learning to live in the moment. I told her that I found that concept very difficult. Especially when you have been a left side thinker for so long. She told me about her special machine and software that works with her computer. It is designed to help you mediate. She has found it very helpful in her quest to mediate. I ask if she read Jill Bolte-Taylor’s book, ‘My Stroke of Insight”, which discusses right brain thinking and mediation practices. She said “Yes, that’s the sort of thing that got her interested in mediation.
During lunch, I call Janice at the church. She has been ferreting out info on disability insurance and the paper work involved. I had filled out your disability papers last week but haven’t sent them yet. I couldn’t fill them sooner because it was tough citing the reason for your disability. ‘Hemorrhagic stroke’. I wrote the words for the first time. It stung. The words don’t seem to really explain the full experience of what we all are undergoing. Two horrifying words: Hemorrhagic Stroke” don’t convey the full meaning very well.
Once home, I drove the van to pick up children. Your car is getting the cruise control installed. I think I have made friends with your car. While driving the van, I keep trying to change gears on it. Apparently that’s not a good idea when you drive an automatic. I also really know what you mean about my van running and braking rough. I never appreciated before but since I have only driven your car for the past few weeks, I have really notice the brakes. The brakes do get better as it warms up but I don’t think I should drive it in the winter.
Dinner is waiting for us when we get home. Chicken minestrone soup made especially with Quinn in mind to help him along in his fight against the virus. For dessert we had Angel cookies … actually ‘Angel Cookies for the Cashen Kids!’… 29 characters including the !. Thanks Janine!
There some cards for you at the door. One card is from Niall. He writes “Hope your Dad gets better Tara” He and his friend, Emma, had a lemonade stand sale and made a whooping $24.26 Canadian and 0.19 American plus a $32.00 gas card which were enclosed in the card!
I will never stop being amazed about how your story inspires such wonderful creative support. Everywhere we go: school, work, grocery store, walking Annie, all the children’s after school activities – Everywhere, people stop to ask how you are doing and express their support for you to get well. This acknowledgment makes our journey easier.
After the children are in bed, I forgo journal writing for the first night since this marathon started. Instead, I build an outside chicken pen. It turned out rather well. I just have to get some chicken wire and we are set. Humane, safe and movable in the garden – the chicks are going to love this.
It does feel good to get a little taste of ‘normal’ life back … even if it’s only for 8 hours. It’s also feels good to finally give the chickens a home I had promised them. Tomorrow, I will focus on your needs again.
I convey my frustration and said that if the consult occurred last week, perhaps this could have been avoided. She didn’t have a reply for this. I asked when could I expect a consult if you continue not to have bladder control yourself. “Probably Monday” she said. Great I’ll be by your side to see… I hope.
I go to work. I’m still frustrated and I vent to all that will listen. I feel a little better. You always know what to say when I’m upset at things, you would say something funny and it would always relax me immediately – that is a gift you have that I always appreciated..
As I start my day, I noticed an unpleasant smell. I ask Joye and Lisamarie if they smell it. They do but none of us can identify it. I wonder around – trying to find the source. I have to go into my first appointment with the smell. After my second appointment, Lisamarie and Joye noted that the smell vanished when I went into an appointment room and re-appeared when I finished. The smell from was me.
After some investigation, I discovered that, somehow, my freshly washed scrub shirt had been sprayed with a dog’s anal glands and I ended up wearing the smell.
So far my first day back … stinks!
The first two clients share their personal stories with me about their recovery from brain injuries. Lynn described how she resumed a lot of function back in the right side. Her legacy is that her handwriting has changed. Sue explained to me how her sensory input (sight, hearing, feel etc) seemed VERY real to her but it was just her reality not real. Her brain fooled her perception of things.
A little later in the morning, I was asked, by a lovely lady with a cat, if I mediated. I said no but I am learning to live in the moment. I told her that I found that concept very difficult. Especially when you have been a left side thinker for so long. She told me about her special machine and software that works with her computer. It is designed to help you mediate. She has found it very helpful in her quest to mediate. I ask if she read Jill Bolte-Taylor’s book, ‘My Stroke of Insight”, which discusses right brain thinking and mediation practices. She said “Yes, that’s the sort of thing that got her interested in mediation.
During lunch, I call Janice at the church. She has been ferreting out info on disability insurance and the paper work involved. I had filled out your disability papers last week but haven’t sent them yet. I couldn’t fill them sooner because it was tough citing the reason for your disability. ‘Hemorrhagic stroke’. I wrote the words for the first time. It stung. The words don’t seem to really explain the full experience of what we all are undergoing. Two horrifying words: Hemorrhagic Stroke” don’t convey the full meaning very well.
Once home, I drove the van to pick up children. Your car is getting the cruise control installed. I think I have made friends with your car. While driving the van, I keep trying to change gears on it. Apparently that’s not a good idea when you drive an automatic. I also really know what you mean about my van running and braking rough. I never appreciated before but since I have only driven your car for the past few weeks, I have really notice the brakes. The brakes do get better as it warms up but I don’t think I should drive it in the winter.
Dinner is waiting for us when we get home. Chicken minestrone soup made especially with Quinn in mind to help him along in his fight against the virus. For dessert we had Angel cookies … actually ‘Angel Cookies for the Cashen Kids!’… 29 characters including the !. Thanks Janine!
There some cards for you at the door. One card is from Niall. He writes “Hope your Dad gets better Tara” He and his friend, Emma, had a lemonade stand sale and made a whooping $24.26 Canadian and 0.19 American plus a $32.00 gas card which were enclosed in the card!
I will never stop being amazed about how your story inspires such wonderful creative support. Everywhere we go: school, work, grocery store, walking Annie, all the children’s after school activities – Everywhere, people stop to ask how you are doing and express their support for you to get well. This acknowledgment makes our journey easier.
After the children are in bed, I forgo journal writing for the first night since this marathon started. Instead, I build an outside chicken pen. It turned out rather well. I just have to get some chicken wire and we are set. Humane, safe and movable in the garden – the chicks are going to love this.
It does feel good to get a little taste of ‘normal’ life back … even if it’s only for 8 hours. It’s also feels good to finally give the chickens a home I had promised them. Tomorrow, I will focus on your needs again.
Tuesday September 29 – Hope to Faith, Faith to Action
I drove in with Darren again. Darren has a teenage daughter, who is becoming a pretty responsible adult. As we talk, I think I could probably pick up some pointers about daughters in their tweens. He and his wife, Barb, have some good ideas about daughters and part-time jobs and boyfriends. We should take note.
I start back to work tomorrow. I’m a little nervous about going back to work tomorrow. It seems like a lifetime ago that I was a vet. Well at least I don’t have to relearn it … like you - I just have to shift gears. My journal entries may be a little less frequent as I start to juggle the vet-work ball too.
My plan for the week is to work Monday, Wednesday and Friday. Then I can visit you on Tuesday and Thursday. On the weekend end we all will visit you and possibly stay over night.
You are dressed when I get to your room. Caroline, today’s nurse, said you had a bit of a fever. She gave some Tylenol and put a fan on you. You gestured to me you have a headache. It took a while to track down a nurse and we are still waiting on the urology consult.
Physio Steve and Linda work with you. Linda notes that both your hips are sore – left worse then the right. She suggested some xrays may be a good idea. During the physio, you say fairly clearly, but weak, voice that you want to sit up. You try to say something else but I don’t know what – I get a pen and paper – but no writing today. I think that it may be too much of an effort to write at this time.
I tell you about the Angels winning their division and that they will be in the playoffs with New York and Boston as the wild card. The central divison is still being sorted out. It will be either Detroit or Minnesota. I promised you that I’d tape the games if I can figure out your TV downstairs and when the games are on etc.
We get you in the chair – you fall asleep.
Lorraine loaned me a video called ‘Life Support Music’ about a young musician, Jason Crigler, who had a major hemorrhagic stroke and was on life support for a few months and then it documented his recovery over the next 2 years. The doctors didn’t expect him to live, let alone this dramatic recovery. Was this recovery exceptional … since it was unexpected by the doctors – it probably is exceptional. How common is exceptional?
I watch the video. It starts Jason, pre-stroke, full of life and expectations, very expressive and a fun guy. The it moves to various family and friends recalling his stroke as it started. I chronicles his days in ICU and the dismisal prognosis the doctors gave. His sister started a journal and she read parts of it for the film. The story tracks his hospital and the rehabilitation hospital stay.
His wife describes how time moved for her at this point. “Being in such a survival mode … time felt very different. Everything seemed like an eternity and a blip all at the same time.” I can certainty identify with these feelings.
He got an infection during recovery in the rehab and there was no health coverage for more rehab. So the medical community recommended that he go into a long-term care facility. The family felt Jason was ‘still there’. They were not going to give up on him. The whole extended family worked together to give him the rehab care and the environment he needed.
It took two years - but he came back. He reentered the professional musical career he had. He ‘grew up again’ with his daughter who was born while he was in ICU. One thing that didn’t return when the documentary was made, were his facial expressions. On the pre-stroke clips at the beginning of the film – he was very expressive and full of life. Now he isn’t. People can’t see his feelings, but they could hear them through his music.
At the end of the film – the extended family are having a meal to celebrate Jason’s exceptional recovery. His father made a good point “Faith goes beyond hope; You don’t say I hope his is going to get well … you say I have faith he’s going to get well.
Jason’s family transformed their faith, in Jason, into action for Jason’s recovery. Is this how Jason’s recovery became exceptional. Will this be what we need to do for you to make an exceptional recovery?
Sue, the speech and communication therapist comes in and does a swallow assessment and finds that you can swallow, but it is still very weak and you need to work on it. She gives me ideas about getting you to do exercises to enhance your swallowing ability. “See if you can move your tongue in and out and side to side, also press your lips together and blow to increase your lip strength.” She says. She suggested that a mirror would help.
I’m picturing some pretty amusing facial antics while we practice this together. I can’t wait until the weekend when Tara and Quinn can join in.
Physio Elaine worked your arm again. She is very pleased with the fluidity of your joints. She said that you should look to your left more. This makes sense. If you want to connect mentally with your left side – your eyes need to start the process. If you look to the left the limbs will follow.
She asks you some other questions and asks you to blink if the answer is yes. There is a long pause after the question – I thought you faded out on us and we lost your signal – then after about 15 seconds – you give a strong vigorous blink. Ahha! You are home. It just takes you some time to process the question and then figure out how you are going to communicate your answer through the blink. A process we don’t even have to think about but you have to do. It takes effort.
Elaine is quite demanding but I am happy with her approach. She suggests that I take you outside for a change of scenery. I was wondering if that could be done. I don’t think bright lights would bother you so it should be nice. Maybe Thursday.
She explains that it’s going to take a lot of hard work to get your body back. She asks “Are you going to work hard to get better?” You say “YES” with the most force I’ve hear from you so far – still a weak voice – but strong for you – You are thinking positively!
I choke up a little and cry – rejoicing in your determination – Thank God you are so determined – I pray that you keep that quality because with your determination and your family and friends’ faith then the exceptional is possible.
Today’s nurses seem to know nothing of a urology consult. I’m starting to get frustrated. I was with you all day and no consult.
I drive home with Marsha. I share my frustration with her. Her advice is “be assertive with the charge nurse”. She’s the one to talk to about my concerns. I wish I understood the patient care decision-making and communication hierarchy better. If the hospital would have told me how healthcare decisions are made and by whom, I would feel a lot more comfortable. As things are now, the only healthcare people that I get to see are the nurses and the occupational therapy and physio staff. I feel like there is no communication between your nurses and the doctors ... and us.
I pick up the children. Quinn is still under the weather and missed his swim lesson. Tara had fun at swimming. We drop off your car to get cruise control installed. Laura, fellow pool and school mother and runner, drives us back home. She has been running for you.
Annie greets us at the door happy to see us and smells really good. Val, from the vet hospital, gave her a big long walk and a bath. She smells very cuddly. We have another great dinner from the food fairies and after dinner we clean chicken pen. Now it smells good too but the chickens are not so cuddly.
We get a call from the hospital, my gut tightens, it’s Debbie calling to say that you have changed rooms. You are in “Room 7324 bed 2 … by the window!” she adds lightly. I think to myself that this may be good because there will be more nurse traffic in a double room then there was in a single room. There is always a silver lining to everything … that’s my rule. Hopefully I’m right.
I’m tired to night. I have got to go to bed early and dream about my assertive approach with the charge nurse tomorrow morning.
I start back to work tomorrow. I’m a little nervous about going back to work tomorrow. It seems like a lifetime ago that I was a vet. Well at least I don’t have to relearn it … like you - I just have to shift gears. My journal entries may be a little less frequent as I start to juggle the vet-work ball too.
My plan for the week is to work Monday, Wednesday and Friday. Then I can visit you on Tuesday and Thursday. On the weekend end we all will visit you and possibly stay over night.
You are dressed when I get to your room. Caroline, today’s nurse, said you had a bit of a fever. She gave some Tylenol and put a fan on you. You gestured to me you have a headache. It took a while to track down a nurse and we are still waiting on the urology consult.
Physio Steve and Linda work with you. Linda notes that both your hips are sore – left worse then the right. She suggested some xrays may be a good idea. During the physio, you say fairly clearly, but weak, voice that you want to sit up. You try to say something else but I don’t know what – I get a pen and paper – but no writing today. I think that it may be too much of an effort to write at this time.
I tell you about the Angels winning their division and that they will be in the playoffs with New York and Boston as the wild card. The central divison is still being sorted out. It will be either Detroit or Minnesota. I promised you that I’d tape the games if I can figure out your TV downstairs and when the games are on etc.
We get you in the chair – you fall asleep.
Lorraine loaned me a video called ‘Life Support Music’ about a young musician, Jason Crigler, who had a major hemorrhagic stroke and was on life support for a few months and then it documented his recovery over the next 2 years. The doctors didn’t expect him to live, let alone this dramatic recovery. Was this recovery exceptional … since it was unexpected by the doctors – it probably is exceptional. How common is exceptional?
I watch the video. It starts Jason, pre-stroke, full of life and expectations, very expressive and a fun guy. The it moves to various family and friends recalling his stroke as it started. I chronicles his days in ICU and the dismisal prognosis the doctors gave. His sister started a journal and she read parts of it for the film. The story tracks his hospital and the rehabilitation hospital stay.
His wife describes how time moved for her at this point. “Being in such a survival mode … time felt very different. Everything seemed like an eternity and a blip all at the same time.” I can certainty identify with these feelings.
He got an infection during recovery in the rehab and there was no health coverage for more rehab. So the medical community recommended that he go into a long-term care facility. The family felt Jason was ‘still there’. They were not going to give up on him. The whole extended family worked together to give him the rehab care and the environment he needed.
It took two years - but he came back. He reentered the professional musical career he had. He ‘grew up again’ with his daughter who was born while he was in ICU. One thing that didn’t return when the documentary was made, were his facial expressions. On the pre-stroke clips at the beginning of the film – he was very expressive and full of life. Now he isn’t. People can’t see his feelings, but they could hear them through his music.
At the end of the film – the extended family are having a meal to celebrate Jason’s exceptional recovery. His father made a good point “Faith goes beyond hope; You don’t say I hope his is going to get well … you say I have faith he’s going to get well.
Jason’s family transformed their faith, in Jason, into action for Jason’s recovery. Is this how Jason’s recovery became exceptional. Will this be what we need to do for you to make an exceptional recovery?
Sue, the speech and communication therapist comes in and does a swallow assessment and finds that you can swallow, but it is still very weak and you need to work on it. She gives me ideas about getting you to do exercises to enhance your swallowing ability. “See if you can move your tongue in and out and side to side, also press your lips together and blow to increase your lip strength.” She says. She suggested that a mirror would help.
I’m picturing some pretty amusing facial antics while we practice this together. I can’t wait until the weekend when Tara and Quinn can join in.
Physio Elaine worked your arm again. She is very pleased with the fluidity of your joints. She said that you should look to your left more. This makes sense. If you want to connect mentally with your left side – your eyes need to start the process. If you look to the left the limbs will follow.
She asks you some other questions and asks you to blink if the answer is yes. There is a long pause after the question – I thought you faded out on us and we lost your signal – then after about 15 seconds – you give a strong vigorous blink. Ahha! You are home. It just takes you some time to process the question and then figure out how you are going to communicate your answer through the blink. A process we don’t even have to think about but you have to do. It takes effort.
Elaine is quite demanding but I am happy with her approach. She suggests that I take you outside for a change of scenery. I was wondering if that could be done. I don’t think bright lights would bother you so it should be nice. Maybe Thursday.
She explains that it’s going to take a lot of hard work to get your body back. She asks “Are you going to work hard to get better?” You say “YES” with the most force I’ve hear from you so far – still a weak voice – but strong for you – You are thinking positively!
I choke up a little and cry – rejoicing in your determination – Thank God you are so determined – I pray that you keep that quality because with your determination and your family and friends’ faith then the exceptional is possible.
Today’s nurses seem to know nothing of a urology consult. I’m starting to get frustrated. I was with you all day and no consult.
I drive home with Marsha. I share my frustration with her. Her advice is “be assertive with the charge nurse”. She’s the one to talk to about my concerns. I wish I understood the patient care decision-making and communication hierarchy better. If the hospital would have told me how healthcare decisions are made and by whom, I would feel a lot more comfortable. As things are now, the only healthcare people that I get to see are the nurses and the occupational therapy and physio staff. I feel like there is no communication between your nurses and the doctors ... and us.
I pick up the children. Quinn is still under the weather and missed his swim lesson. Tara had fun at swimming. We drop off your car to get cruise control installed. Laura, fellow pool and school mother and runner, drives us back home. She has been running for you.
Annie greets us at the door happy to see us and smells really good. Val, from the vet hospital, gave her a big long walk and a bath. She smells very cuddly. We have another great dinner from the food fairies and after dinner we clean chicken pen. Now it smells good too but the chickens are not so cuddly.
We get a call from the hospital, my gut tightens, it’s Debbie calling to say that you have changed rooms. You are in “Room 7324 bed 2 … by the window!” she adds lightly. I think to myself that this may be good because there will be more nurse traffic in a double room then there was in a single room. There is always a silver lining to everything … that’s my rule. Hopefully I’m right.
I’m tired to night. I have got to go to bed early and dream about my assertive approach with the charge nurse tomorrow morning.
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