Heather and Tanya
Friday, October 20, 2006
Monday, October 16, 2006
EARTHQUAKE!
Monday, 16 October 2006
When the hospital bed started shaking, Dad said, since he couldn't move, he might as well "go for the ride". Then, he and my stepmom noticed the water in the humidifier moving when his Bi-Pap machine turned off. Yes, so after a 6.6 earthquake yesterday (the walls and the house were shaking so violently that it was the scariest quake I've ever been in..especially since my house is on stilts on the side of a mountain!), and with the electricity going out about 5 minutes later, it made for an interesting, wet, gray day.
After we checked the structure of the house, my boyfriend Chris and I went to his parents house to find some food. We ate cold leftover Thai food from the night before (yum!)....We also checked on my Dad, and helped my stepmom watch him so she could pick up my stepsister, but we had to do some creative transferring with my dad since none of his things (ie. hospital bed, recliner chair, and BiPap breathing machine) were working (as they need to be plugged in...).
We lit propane lamps and candles, and for a short while ran an extension cord across the street to a neighbor's house who had a generator. They tried to open cans of tuna (but without the electric can opener), it proved more difficult than anything. Their electricity soon came on, but then, Chris and I headed to his parents' for dinner. Still no electricity there. They were slowly getting electricity back to neighborhoods throughout the island, from west to east, Leeward to Koko Head. I think the mountains got electricity last. It was like a ghost town, with no street lights, hardly any cars around, and people holed up in their homes all day.
We ended up using our teamwork to make up a fabulous meal of pasta, salad and french bread, on a two burner propane gas stove outside on the lanai, and then we ate in the darkness with candlelight (such ambience!). We left with lanterns and flashlights (after we tried to clean up, but with no hot water,we gave up) and Chris got me home to my dark house down 85 stairs safely. Took an ice cold shower in the dark and went to bed. The nice beep of the cell phone charger and DVD player turning on signaled electricity was back at my house at about 11:30 pm last night.
Amidst the gloomy Seattle-like weather, the sirens going off all day long, the long lines at the few gas stations that were open, and the hours of boredom (but it led to good conversations, perusing old photo albums of trips from the past, and my friends peeling peanuts to grind them and make peanut butter, with poker game soon after), it made for an interesting day and a good story to tell afterwards. All schools are open today as usual (except for my high school Kamehameha). Kids are already outside telling how they had to take cold showers yesterday, how scared they were, and one of my kindergartners had difficulty leaving her mom until I came to get her and bring her to class.
Of course it's all over the news and radio. Some debate about how efficient they were in communicating with the public that the power would be restored last night. Others shared their stories of trying to find food all day and all night, being creative with resources they had. The Big Island has the most damage. Even though the governor declared it a disaster area, there is not much structural damage on O'ahu. Here on O'ahu, the Cold Stone Creamery gave away free ice cream yesterday as it was melting away, and most people stayed home all day. Traffic lights were still out this morning, and traffic was heavy again for the beginning of the work week. But, at least this earthquake took place on a Sunday. It would have been mayhem otherwise.
We were all hooked up to the battery operated radios and the one station (KSSK) that was broadcasting the news. I actually heard more information from relatives who called and could relay what they were hearing on CNN. Unfortunately, we never saw that coverage. (=
Well, thanks for keeping me and my family in your thoughts. It's back to the grind. I've got my overripe bananas and Trader Joe's dried fruit for breakfast this morning, since that was the only thing in the house that was good to eat.
Thanks to those that tried to call yesterday (Even one of my parents in Thailand wrote me an email to see how me and the family were doing!). I heard the circuits were quite busy. We're all safe and good. Just have to throw out the bad food in the fridge and probably do a second check to make sure my house is still structurally sound.
When the hospital bed started shaking, Dad said, since he couldn't move, he might as well "go for the ride". Then, he and my stepmom noticed the water in the humidifier moving when his Bi-Pap machine turned off. Yes, so after a 6.6 earthquake yesterday (the walls and the house were shaking so violently that it was the scariest quake I've ever been in..especially since my house is on stilts on the side of a mountain!), and with the electricity going out about 5 minutes later, it made for an interesting, wet, gray day.
After we checked the structure of the house, my boyfriend Chris and I went to his parents house to find some food. We ate cold leftover Thai food from the night before (yum!)....We also checked on my Dad, and helped my stepmom watch him so she could pick up my stepsister, but we had to do some creative transferring with my dad since none of his things (ie. hospital bed, recliner chair, and BiPap breathing machine) were working (as they need to be plugged in...).
We lit propane lamps and candles, and for a short while ran an extension cord across the street to a neighbor's house who had a generator. They tried to open cans of tuna (but without the electric can opener), it proved more difficult than anything. Their electricity soon came on, but then, Chris and I headed to his parents' for dinner. Still no electricity there. They were slowly getting electricity back to neighborhoods throughout the island, from west to east, Leeward to Koko Head. I think the mountains got electricity last. It was like a ghost town, with no street lights, hardly any cars around, and people holed up in their homes all day.
We ended up using our teamwork to make up a fabulous meal of pasta, salad and french bread, on a two burner propane gas stove outside on the lanai, and then we ate in the darkness with candlelight (such ambience!). We left with lanterns and flashlights (after we tried to clean up, but with no hot water,we gave up) and Chris got me home to my dark house down 85 stairs safely. Took an ice cold shower in the dark and went to bed. The nice beep of the cell phone charger and DVD player turning on signaled electricity was back at my house at about 11:30 pm last night.
Amidst the gloomy Seattle-like weather, the sirens going off all day long, the long lines at the few gas stations that were open, and the hours of boredom (but it led to good conversations, perusing old photo albums of trips from the past, and my friends peeling peanuts to grind them and make peanut butter, with poker game soon after), it made for an interesting day and a good story to tell afterwards. All schools are open today as usual (except for my high school Kamehameha). Kids are already outside telling how they had to take cold showers yesterday, how scared they were, and one of my kindergartners had difficulty leaving her mom until I came to get her and bring her to class.
Of course it's all over the news and radio. Some debate about how efficient they were in communicating with the public that the power would be restored last night. Others shared their stories of trying to find food all day and all night, being creative with resources they had. The Big Island has the most damage. Even though the governor declared it a disaster area, there is not much structural damage on O'ahu. Here on O'ahu, the Cold Stone Creamery gave away free ice cream yesterday as it was melting away, and most people stayed home all day. Traffic lights were still out this morning, and traffic was heavy again for the beginning of the work week. But, at least this earthquake took place on a Sunday. It would have been mayhem otherwise.
We were all hooked up to the battery operated radios and the one station (KSSK) that was broadcasting the news. I actually heard more information from relatives who called and could relay what they were hearing on CNN. Unfortunately, we never saw that coverage. (=
Well, thanks for keeping me and my family in your thoughts. It's back to the grind. I've got my overripe bananas and Trader Joe's dried fruit for breakfast this morning, since that was the only thing in the house that was good to eat.
Thanks to those that tried to call yesterday (Even one of my parents in Thailand wrote me an email to see how me and the family were doing!). I heard the circuits were quite busy. We're all safe and good. Just have to throw out the bad food in the fridge and probably do a second check to make sure my house is still structurally sound.
Saturday, October 14, 2006
The Weekend Has Begun
Friday, 13 October 2006
Happy Birthday, Linh! Tonight, Chris and I went to Ocean's to meet Linh and her friends for drinks and pupus to celebrate her birthday.
Saturday, 14 October 2006
After 7 am yoga, I went to a baby shower for Audrey, the director of Muscular Dystrophy Association. We enjoyed food, fancy desserts, girl gabbing, playing the poopy diaper game, and opening gifts. Had a nice talk with my stepmom afterwards. Chris and I went to look for Halloween costumes tonight after enjoying some Thai food for dinner. We tried to come up with ideas that come in two's...Wine and Cheese, Two Peas in a Pod, celebrity couples and entertainers, etc. You'll have to wait until next week to see what we've come up with.
Happy Birthday, Linh! Tonight, Chris and I went to Ocean's to meet Linh and her friends for drinks and pupus to celebrate her birthday.
Saturday, 14 October 2006
After 7 am yoga, I went to a baby shower for Audrey, the director of Muscular Dystrophy Association. We enjoyed food, fancy desserts, girl gabbing, playing the poopy diaper game, and opening gifts. Had a nice talk with my stepmom afterwards. Chris and I went to look for Halloween costumes tonight after enjoying some Thai food for dinner. We tried to come up with ideas that come in two's...Wine and Cheese, Two Peas in a Pod, celebrity couples and entertainers, etc. You'll have to wait until next week to see what we've come up with.
Thursday, October 12, 2006
Thoughts On Ventilators
As we begin to find out more about ventilators, I came across this article mentioned in a previous post. Read below to find out one person's experience using mechanical ventilation.
____________________________________________________________________
Safe Harbor: Rediscovering Life on a Vent
by Diane Huberty
MDA/ALS Newsmagazine July 2005
This month marks my first anniversary of life on a vent — a tracheostomy tube and mechanical ventilator. As I look back over this year and try to sum up my feelings, the words that come to my mind are "safe harbor." I have found a shelter, a place where I can literally and figuratively catch my breath, get my bearings, and even make some repairs to my storm-battered body.
The effects of the vent on my health — oxygen levels that prevent headaches and give me energy, stamina, appetite, and pink cheeks — are equaled by improvements in my quality of life. My days are no longer dominated by shortness of breath, tiredness, and fear of the next episode of lung congestion.
My world has re-expanded along with my lungs. BiPAP (bi-level positive airway pressure, a noninvasive form of ventilation) was fine for relieving nighttime breathing problems, but as my daytime use of it increased, my world shrank.
Even if the BiPAP machine had fit on my wheelchair, the mask and headgear were too bizarre-looking for me to want to go out. As a result I seldom went outside, much less left home.
Simply talking left me breathless, dizzy and worn out, making socializing too much work. I needed 10 or 12 hours of sleep a night and still was exhausted by bedtime.
People talk about the horror of being "tied to a machine" when they talk about vents, but they've got it all wrong. I already was tied to another machine, my wheelchair, and like the wheelchair, the vent has only increased my freedom, not tied me down.
Now with the vent I'm out for hours shopping, sitting outside chatting with neighbors, supervising outdoor projects, even accompanying my husband to his part-time job and staying up too late! The vent doesn't draw stares like the BiPAP.
I actually feel rather proud to be seen out and about doing normal things. I feel I'm representing the physically disabled and showing able people that, vent and all, we're still more like them than different.
Feeling Secure
Of all of the improvements the vent has made, the greatest is the feeling of safety it has given me. It sounds strange to say I feel safer with my life dependent on a hunk of — egad! — computer-run hardware and some batteries, but I do. It's far more dependable than my own body was and, unlike my body, comes with a backup unit.
The vent alarms, something very few BiPAP machines have, also contribute to safety. There are no more horrible episodes of not being able to reach my call button when I can't breathe because of congestion or disconnected tubing. The vent alerts my family for me.
Life-threatening congestion is also a thing of the past. Relief is just a suction tube away! That little rattle in my chest that once heralded the onset of an exhausting and frightening hour of trying to cough out congestion is now just a signal that I need suctioning.
Suctioning seemed like a big deal at first but quickly became fast and easy for my caregivers — a mere annoyance, not a medical event! Suctioning makes me cough hard so it probably looks like a miserable experience, but it isn't at all. It's no more uncomfortable than any ordinary coughing spell and it leaves me rattle free. It's an
incredible improvement over swigging expectorant cough medicine and then trying to hack up congestion using a cough-assist device or a series of Heimlichlike belly bruisers! How does it feel to be on a vent? It doesn't! I'm as unaware of my
breathing as anyone else. No feeling of air being forced on me, no arguments with the vent over the rate and depth of my breathing. I just breathe!
I expected a general ache or sore-throat feeling from the presence of the trach tube, but I'm aware of it only if it gets tugged sideways or needs repositioning. At times the skin around the opening may get irritated, causing the only discomfort.
The Costs of a Vent
What does it cost to be on a vent? Thanks to Medicare Part B, the cost is manageable. My vent costs include vent, nebulizer (to deliver medicine) and suction machine rental, disposable supplies (hoses, filters, suction catheters and gloves, trach dressings) and monthly trach insert changes. The cost of those supplies has gone down as we became more comfortable with less frequent hose, filter
and trach changes, and switched to plain old soap and water for trach care. As far as we can figure from the slow Medicare process, we now pay about $300 to $400 a month.
What about the burden my care puts on my husband and friends? The only daily additions to my care are trach dressing changes and suctioning. Trach care takes about three minutes once a day. (I have a Bivona brand trach with no inner cannula [a tube within the trach tube] to change.) Suctioning takes about three minutes also, and the number of times a day I need suctioning varies from a few to a
dozen.
There are about two hours a week of equipment maintenance and an occasional nebulizer treatment to be done.
All that doesn't add up to a lot of extra time, but when added to the hours of care I already require it does count. On the positive side, it is easier, faster, and much less frightening and frustrating to suction me than to assist me through a bad coughing spell.
As any caregiver knows, the burden of care can't simply be measured in hours. The stress and emotional toll can be much worse. For example, I can never be left home alone. Actually, it was probably every bit as dangerous for me to be alone for the last several years, but it's "officially" dangerous now!
Thanks to having a live-in helper who, although she has a full-time job, allows my husband to get away in the evenings and on weekends, being available is now only annoyingly restrictive to him. And with two wonderful friends and my daughters, who were also trained in the basics of vent care, he gets time to run errands on weekdays and even take a full day off once in a while.
Being on the vent has made many things easier, however. Even though we have to pack a laundry basket of "just in case" equipment to leave home, I'm a lot more portable than before simply because I feel good again. For him, the good news is that I can accompany him most places. The bad news is that I can accompany him most places!
Clear Sailing
I'm no Pollyanna. I'm well aware that my safe harbor is a temporary shelter. My ALS will continue to progress, taking the wind out of my sails and warping my timbers. There will come a day when I'll need to decide if it's time to abandon ship, but that could be years from now.
In the meantime I can and do enjoy my life. It's so much easier to focus on the positives when breathing isn't a moment-to-moment battle!
Thanks to the vent, today I'm enjoying holding our newborn granddaughter, scanning the pages of children's books so I'll be able to read to our 14-month-old granddaughter, working on Web sites. For years I was slowly disengaging from life, withdrawing, preparing to leave. Now I'm re-engaging, rebuilding, and truly enjoying life.
It's a beautiful spring day and the breeze is gentle. I'm going to weigh anchor, raise the mizzen mast and go for a little sail around the yard to make plans for this summer's gardens ... and I'll be planting perennials, not annuals. Life is very good here in Safe Harbor!
Diane Huberty, 56, of Fort Wayne, Ind., received a diagnosis of ALS in 1985. She retired from her position as Neuroscience Clinical Educator at Parkview Hospital in 1995 and has since become involved in computer work including Web site design. She maintains two Web sites devoted to ALS at http://home. att.net/~ liveletdie5/ ALS/home. html and http://living-with-als.org.
____________________________________________________________________
Safe Harbor: Rediscovering Life on a Vent
by Diane Huberty
MDA/ALS Newsmagazine July 2005
This month marks my first anniversary of life on a vent — a tracheostomy tube and mechanical ventilator. As I look back over this year and try to sum up my feelings, the words that come to my mind are "safe harbor." I have found a shelter, a place where I can literally and figuratively catch my breath, get my bearings, and even make some repairs to my storm-battered body.
The effects of the vent on my health — oxygen levels that prevent headaches and give me energy, stamina, appetite, and pink cheeks — are equaled by improvements in my quality of life. My days are no longer dominated by shortness of breath, tiredness, and fear of the next episode of lung congestion.
My world has re-expanded along with my lungs. BiPAP (bi-level positive airway pressure, a noninvasive form of ventilation) was fine for relieving nighttime breathing problems, but as my daytime use of it increased, my world shrank.
Even if the BiPAP machine had fit on my wheelchair, the mask and headgear were too bizarre-looking for me to want to go out. As a result I seldom went outside, much less left home.
Simply talking left me breathless, dizzy and worn out, making socializing too much work. I needed 10 or 12 hours of sleep a night and still was exhausted by bedtime.
People talk about the horror of being "tied to a machine" when they talk about vents, but they've got it all wrong. I already was tied to another machine, my wheelchair, and like the wheelchair, the vent has only increased my freedom, not tied me down.
Now with the vent I'm out for hours shopping, sitting outside chatting with neighbors, supervising outdoor projects, even accompanying my husband to his part-time job and staying up too late! The vent doesn't draw stares like the BiPAP.
I actually feel rather proud to be seen out and about doing normal things. I feel I'm representing the physically disabled and showing able people that, vent and all, we're still more like them than different.
Feeling Secure
Of all of the improvements the vent has made, the greatest is the feeling of safety it has given me. It sounds strange to say I feel safer with my life dependent on a hunk of — egad! — computer-run hardware and some batteries, but I do. It's far more dependable than my own body was and, unlike my body, comes with a backup unit.
The vent alarms, something very few BiPAP machines have, also contribute to safety. There are no more horrible episodes of not being able to reach my call button when I can't breathe because of congestion or disconnected tubing. The vent alerts my family for me.
Life-threatening congestion is also a thing of the past. Relief is just a suction tube away! That little rattle in my chest that once heralded the onset of an exhausting and frightening hour of trying to cough out congestion is now just a signal that I need suctioning.
Suctioning seemed like a big deal at first but quickly became fast and easy for my caregivers — a mere annoyance, not a medical event! Suctioning makes me cough hard so it probably looks like a miserable experience, but it isn't at all. It's no more uncomfortable than any ordinary coughing spell and it leaves me rattle free. It's an
incredible improvement over swigging expectorant cough medicine and then trying to hack up congestion using a cough-assist device or a series of Heimlichlike belly bruisers! How does it feel to be on a vent? It doesn't! I'm as unaware of my
breathing as anyone else. No feeling of air being forced on me, no arguments with the vent over the rate and depth of my breathing. I just breathe!
I expected a general ache or sore-throat feeling from the presence of the trach tube, but I'm aware of it only if it gets tugged sideways or needs repositioning. At times the skin around the opening may get irritated, causing the only discomfort.
The Costs of a Vent
What does it cost to be on a vent? Thanks to Medicare Part B, the cost is manageable. My vent costs include vent, nebulizer (to deliver medicine) and suction machine rental, disposable supplies (hoses, filters, suction catheters and gloves, trach dressings) and monthly trach insert changes. The cost of those supplies has gone down as we became more comfortable with less frequent hose, filter
and trach changes, and switched to plain old soap and water for trach care. As far as we can figure from the slow Medicare process, we now pay about $300 to $400 a month.
What about the burden my care puts on my husband and friends? The only daily additions to my care are trach dressing changes and suctioning. Trach care takes about three minutes once a day. (I have a Bivona brand trach with no inner cannula [a tube within the trach tube] to change.) Suctioning takes about three minutes also, and the number of times a day I need suctioning varies from a few to a
dozen.
There are about two hours a week of equipment maintenance and an occasional nebulizer treatment to be done.
All that doesn't add up to a lot of extra time, but when added to the hours of care I already require it does count. On the positive side, it is easier, faster, and much less frightening and frustrating to suction me than to assist me through a bad coughing spell.
As any caregiver knows, the burden of care can't simply be measured in hours. The stress and emotional toll can be much worse. For example, I can never be left home alone. Actually, it was probably every bit as dangerous for me to be alone for the last several years, but it's "officially" dangerous now!
Thanks to having a live-in helper who, although she has a full-time job, allows my husband to get away in the evenings and on weekends, being available is now only annoyingly restrictive to him. And with two wonderful friends and my daughters, who were also trained in the basics of vent care, he gets time to run errands on weekdays and even take a full day off once in a while.
Being on the vent has made many things easier, however. Even though we have to pack a laundry basket of "just in case" equipment to leave home, I'm a lot more portable than before simply because I feel good again. For him, the good news is that I can accompany him most places. The bad news is that I can accompany him most places!
Clear Sailing
I'm no Pollyanna. I'm well aware that my safe harbor is a temporary shelter. My ALS will continue to progress, taking the wind out of my sails and warping my timbers. There will come a day when I'll need to decide if it's time to abandon ship, but that could be years from now.
In the meantime I can and do enjoy my life. It's so much easier to focus on the positives when breathing isn't a moment-to-moment battle!
Thanks to the vent, today I'm enjoying holding our newborn granddaughter, scanning the pages of children's books so I'll be able to read to our 14-month-old granddaughter, working on Web sites. For years I was slowly disengaging from life, withdrawing, preparing to leave. Now I'm re-engaging, rebuilding, and truly enjoying life.
It's a beautiful spring day and the breeze is gentle. I'm going to weigh anchor, raise the mizzen mast and go for a little sail around the yard to make plans for this summer's gardens ... and I'll be planting perennials, not annuals. Life is very good here in Safe Harbor!
Diane Huberty, 56, of Fort Wayne, Ind., received a diagnosis of ALS in 1985. She retired from her position as Neuroscience Clinical Educator at Parkview Hospital in 1995 and has since become involved in computer work including Web site design. She maintains two Web sites devoted to ALS at http://home. att.net/~ liveletdie5/ ALS/home. html and http://living-with-als.org.
Wednesday, October 11, 2006
Lunchtime Visit
Wednesday, 11 October 2006
Dad had some visitors this afternoon. Uncle Gary brought over lunch, and my dad's friend Dave Chock came brought over some pork hash to add to the spread. We had to sit close to Dad to hear him speak. After Gary went back to work, Dave took over the tool adjacent to my dad's recliner and they continued to talk about people they knew and retirement plans. Uncle Jimmy called and chatted with the both of them on speakerphone. It was nice to see them all chatting away.
At one point we started talking about ventilators and Dad asked for my opinion. I told him that it's ultimately his decision, even though I think that there's no harm in trying the noninvasive route before a trach. After his friend left, Dad and I had a heart to heart talk. I had been reading an article someone sent on the Yahoo! Groups 'Living with ALS' chat room that I often visit, and wanted Dad to read what she had to say about ventilation. Dad stopped me to say he wasn't interested in reading it, and instead reminded me of his current condition. He is still adamant about not wanting to be vented.
"I've had a good life," he said. "I have two great kids....I don't feel like I'm missing out on much."
Of course there's grandkids he won't see, but even with all the pros and the cons of the ventilator, he doesn't like feeling like he's feeling now..."junk" as he simply said. "I don't like feeling junk....I cannot eat very much. I cannot drink much. I just feel junk."
All I could do was hold his hand, cry, give him a hug, and tell him that I love him. "Don't be sad for me", he said, as tears streamed down my face.
He's been gasping for air at times. The shower routine (where we used to have most of our 'conversing') is now a cautious time as I constantly look to his face for warning signs of how he's feeling and what he needs. All the while, the mucous increases in the back of his throat. And he cannot cough it out. He needs to keep drinking water and stay hydrated. But, even taking a sip from a straw is difficult, as it requires him to close his mouth and take a breath -- a breath that is now not as strong as before.
He is grateful for his friends, friends like Dave Chock, who spent the afternoon at the house today. They talked and laughed; and at the end of the day, before he left some licee (money envelope) with money inside for my dad and I captured a picture of them together, Dave gave my Dad a hug and a kiss on the forehead and told him that he loved him. Friends like that, and lunchtime visits, are truly precious.
Dad had some visitors this afternoon. Uncle Gary brought over lunch, and my dad's friend Dave Chock came brought over some pork hash to add to the spread. We had to sit close to Dad to hear him speak. After Gary went back to work, Dave took over the tool adjacent to my dad's recliner and they continued to talk about people they knew and retirement plans. Uncle Jimmy called and chatted with the both of them on speakerphone. It was nice to see them all chatting away.
At one point we started talking about ventilators and Dad asked for my opinion. I told him that it's ultimately his decision, even though I think that there's no harm in trying the noninvasive route before a trach. After his friend left, Dad and I had a heart to heart talk. I had been reading an article someone sent on the Yahoo! Groups 'Living with ALS' chat room that I often visit, and wanted Dad to read what she had to say about ventilation. Dad stopped me to say he wasn't interested in reading it, and instead reminded me of his current condition. He is still adamant about not wanting to be vented.
"I've had a good life," he said. "I have two great kids....I don't feel like I'm missing out on much."
Of course there's grandkids he won't see, but even with all the pros and the cons of the ventilator, he doesn't like feeling like he's feeling now..."junk" as he simply said. "I don't like feeling junk....I cannot eat very much. I cannot drink much. I just feel junk."
All I could do was hold his hand, cry, give him a hug, and tell him that I love him. "Don't be sad for me", he said, as tears streamed down my face.
He's been gasping for air at times. The shower routine (where we used to have most of our 'conversing') is now a cautious time as I constantly look to his face for warning signs of how he's feeling and what he needs. All the while, the mucous increases in the back of his throat. And he cannot cough it out. He needs to keep drinking water and stay hydrated. But, even taking a sip from a straw is difficult, as it requires him to close his mouth and take a breath -- a breath that is now not as strong as before.
He is grateful for his friends, friends like Dave Chock, who spent the afternoon at the house today. They talked and laughed; and at the end of the day, before he left some licee (money envelope) with money inside for my dad and I captured a picture of them together, Dave gave my Dad a hug and a kiss on the forehead and told him that he loved him. Friends like that, and lunchtime visits, are truly precious.
Tuesday, October 10, 2006
Without A Voice
Tuesday, 10 October 2006
First day back to school and first day back to caregiving for Dad.
It was an uneventful day with the kids, as they were all excited to share about where they went for vacation, and all of my kindergartners were ready to be back at school, sharing that they read at home during break.
When I got to Dad's, I discovered that he didn't have a voice. Apparently, he hasn't had a voice all weekend. Sounding like a faint whisper, but barely audible, you have to hold your head at least a couple feet away from his face to understand him, or begin to read his lips. He has been having trouble breathing lately, and because he hasn't been using his Bi-Pap machine like he should, he hasn't been getting restful sleep and ends up with headaches during the day. He's now realizing that he should use the Bi-Pap at night during sleep.
This is the next stage of the disease.
Unfortunately, the children's books and the tape recorder are still sitting on the desk by his recliner chair. So it looks like we won't be able to record his voice for 'my own children' like we had planned.
Tonight was the ALS Support Group meeting at Queen's. The topic was apropos, Mechanical Ventilation: To Vent or Not To Vent. The respiratory therapists talked about the logistics of the machines, and then caregivers talked about their experiences with providing round-the-clock care for their loved ones. Many of our friends noticed that Dad's voice has gotten weak. Dad and Bernie talked to the respiratory therapist for awhile on how the ventilator works and all. Even though Dad is adamant that he does not want to be vented and go through a tracheostomy, I was happy to see that he was open to listening and finding out more information about the ventilator, which is much improved now with the advancement of technology these days (much lighter than a refrigerator and even portable now like a laptop).
Even so, it is difficult to see my father without the strength of his voice. That which used to yell down the basketball court, the baseball and soccer field when we were younger and that which used to yell at me when I was being my teenage stubborn self, is only a soft spoken one now. Even bathing was difficult today, as he started having panick attacks when I washed his hair and face. He can't hold his breath as long as he used to, so a few seconds of water is all he can handle.
Although we had to turn down the radio in the car to hear him speak, and we joked about how he can't argue with my stepmom anymore, he still has his mind, his thoughts, his sense of humor, and his memories. And, when I see him smile and laugh, that's all the comfort I need...even without a voice.
First day back to school and first day back to caregiving for Dad.
It was an uneventful day with the kids, as they were all excited to share about where they went for vacation, and all of my kindergartners were ready to be back at school, sharing that they read at home during break.
When I got to Dad's, I discovered that he didn't have a voice. Apparently, he hasn't had a voice all weekend. Sounding like a faint whisper, but barely audible, you have to hold your head at least a couple feet away from his face to understand him, or begin to read his lips. He has been having trouble breathing lately, and because he hasn't been using his Bi-Pap machine like he should, he hasn't been getting restful sleep and ends up with headaches during the day. He's now realizing that he should use the Bi-Pap at night during sleep.
This is the next stage of the disease.
Unfortunately, the children's books and the tape recorder are still sitting on the desk by his recliner chair. So it looks like we won't be able to record his voice for 'my own children' like we had planned.
Tonight was the ALS Support Group meeting at Queen's. The topic was apropos, Mechanical Ventilation: To Vent or Not To Vent. The respiratory therapists talked about the logistics of the machines, and then caregivers talked about their experiences with providing round-the-clock care for their loved ones. Many of our friends noticed that Dad's voice has gotten weak. Dad and Bernie talked to the respiratory therapist for awhile on how the ventilator works and all. Even though Dad is adamant that he does not want to be vented and go through a tracheostomy, I was happy to see that he was open to listening and finding out more information about the ventilator, which is much improved now with the advancement of technology these days (much lighter than a refrigerator and even portable now like a laptop).
Even so, it is difficult to see my father without the strength of his voice. That which used to yell down the basketball court, the baseball and soccer field when we were younger and that which used to yell at me when I was being my teenage stubborn self, is only a soft spoken one now. Even bathing was difficult today, as he started having panick attacks when I washed his hair and face. He can't hold his breath as long as he used to, so a few seconds of water is all he can handle.
Although we had to turn down the radio in the car to hear him speak, and we joked about how he can't argue with my stepmom anymore, he still has his mind, his thoughts, his sense of humor, and his memories. And, when I see him smile and laugh, that's all the comfort I need...even without a voice.
Monday, October 09, 2006
Enjoying the Last Day of Vacation
Monday, 9 October 2006
Discoverer's Day/Columbus Day/Teacher Institute Day.....Basically it was another day off from the kids anyway. I went to Neil Blaisdell Center to stand in line for twenty minutes for a free flu shot, then walk around and get free stuff from vendors...You know teachers love free stuff. Coupons for restaurants, tote bags, education materials, pens, water bottles, etc.
Visited Nina's mom at the hair salon and picked up my swimsuit she's had for a couple of weeks, then visited Nina at McCully Bike to give her a card from my dad and stepmom. Went over to Miya's and poor Taiga didn't recognize me anymore! He was staring at me like, "Who the hell are you woman?" He was having major separation anxiety. I guess it's been awhile since I've seen him, but sad to not see his bubbly smiley face!
On a happy note, my friend Maila was induced today, and Stacy has been text messaging me to keep me updated on the contraction status...Just waiting to pop!
Chris took me to Jimbo's for dinner, and then we watched a great movie, 'The Illusionist'. I always love Edward Norton and, most of all, movies that make you think. It was a wonderful way to end my vacation.
Discoverer's Day/Columbus Day/Teacher Institute Day.....Basically it was another day off from the kids anyway. I went to Neil Blaisdell Center to stand in line for twenty minutes for a free flu shot, then walk around and get free stuff from vendors...You know teachers love free stuff. Coupons for restaurants, tote bags, education materials, pens, water bottles, etc.
Visited Nina's mom at the hair salon and picked up my swimsuit she's had for a couple of weeks, then visited Nina at McCully Bike to give her a card from my dad and stepmom. Went over to Miya's and poor Taiga didn't recognize me anymore! He was staring at me like, "Who the hell are you woman?" He was having major separation anxiety. I guess it's been awhile since I've seen him, but sad to not see his bubbly smiley face!
On a happy note, my friend Maila was induced today, and Stacy has been text messaging me to keep me updated on the contraction status...Just waiting to pop!
Chris took me to Jimbo's for dinner, and then we watched a great movie, 'The Illusionist'. I always love Edward Norton and, most of all, movies that make you think. It was a wonderful way to end my vacation.
Sunday, October 08, 2006
Vacation in Seattle
Sunday, 8 October 2006
After a week of visiting with friends, visting schools I used to teach at, and doing yoga at my old Bikram yoga studio in West Seattle, I returned home to Hawai'i. I had my lunches and dinners booked for the week. I helped my friend Maila clean the baby room and get ready to pop, had a barbeque with friends driving from a couple of hours away to drink, talk, and catch up. The circle of friends now widens with the pitter patter of little feet. Although Maila didn't have her baby girl while I was there, and two-year old Max was a little under the weather, I had a blast playing with baby Jake, my cousin's baby, who would peek under my blanket and play peek-a-boo, succumb in laughter to my tickle wars, and amaze me with his quick fingers when he would change the TV to the DVD player function and turn on his Elmo's World video (which theme song, by the way, will forever be in my mind...along with Jake's cute linebacker bouncing action). Oh, and I managed to get some shopping in and ship back more of my stuff too. Although I didn't see everybody, I saw a lot of friends, and it was nice to get away from the humidity and heat. The weather was nice, for the most part, and I got to see some of the leaves changing for fall. I miss Seattle and my friends there, but I have to admit, it was nice to come home.
After a week of visiting with friends, visting schools I used to teach at, and doing yoga at my old Bikram yoga studio in West Seattle, I returned home to Hawai'i. I had my lunches and dinners booked for the week. I helped my friend Maila clean the baby room and get ready to pop, had a barbeque with friends driving from a couple of hours away to drink, talk, and catch up. The circle of friends now widens with the pitter patter of little feet. Although Maila didn't have her baby girl while I was there, and two-year old Max was a little under the weather, I had a blast playing with baby Jake, my cousin's baby, who would peek under my blanket and play peek-a-boo, succumb in laughter to my tickle wars, and amaze me with his quick fingers when he would change the TV to the DVD player function and turn on his Elmo's World video (which theme song, by the way, will forever be in my mind...along with Jake's cute linebacker bouncing action). Oh, and I managed to get some shopping in and ship back more of my stuff too. Although I didn't see everybody, I saw a lot of friends, and it was nice to get away from the humidity and heat. The weather was nice, for the most part, and I got to see some of the leaves changing for fall. I miss Seattle and my friends there, but I have to admit, it was nice to come home.
Monday, October 02, 2006
At "Home" in Seattle
Saturday, 30 September 2006
Yeah, well the not bringing any closed toed shoes, socks, and jackets plan didn’t quite work out. It’s cold, gray and overcast today, with that nice Seattle chill and crisp cool air.
Sunday, 1 October 2006
Up at 7:30 am . Went to New Hope church in Shoreline at 10 am. Steph brought me extra clothes so that I didn’t look like I just came from a bar or something. Ate lots of Hawaiian food at the lu’au afterwards. Watched Jake as Aunty Jane and Steph frantically helped serve food. Drove to Marissa’s afterwards to take a nap. Tara had the same idea, as she was vegging out on the couch. I went in and out of consciousness for the rest of the afternoon. Marissa and Tara left to get coffee at one point. Marissa even went to see an afternoon play with her dad. Tara and I watched the travel channel, the food channel, and Project Runway, as I gave my two cents about every hour, and then two seconds later would fall back asleep. Tara and I went to join Marissa and her parents for dinner at a swanky restaurant called Blackbird, near the Admiral Theatre in West Seattle. Had a lovely Mediterranean salad with ahi and spicy ravioli. Marissa let me borrow her car today. Drove home and went to sleep.
Monday, 2 October 2006
Went to 9:30 am yoga since it’s been about a week since I last went. It was fun to catch up with Amber. She was impressed that I did the 31 day challenge. Felt dizzy and out of it today during class, but I made it through and felt much better afterwards. One gal next to me asked me how long I’ve been practicing. She thanked me as she said she learned a thing or two from my postures today.
Ate leftovers at home for lunch and visited with Aunty Jane and Jake and the new housekeeper Amanda. Went to Sanislo, my favorite school, to visit teacher colleagues and staff and drop off chocolate macadamia nuts. Stayed for a couple hours and then went to the library to check email. Met Sharon and Teresa, kindergarten teachers I taught with at Sanislo, at my favorite Thai restaurant, only it was closed, so we had opted for plan B, which was Indian food. Stuffed ourselves with chicken vindaloo and garlic naan, among other things. We talked about Anna Rae’s first year of college, my dad, and teaching in Hawai’i. Ate pumpkin pie for dessert at home, played with Jake, watched Marissa’s wedding video, and caught up on the phone. Steph and Michael let me borrow socks! So, at least my toes are warm!
Yeah, well the not bringing any closed toed shoes, socks, and jackets plan didn’t quite work out. It’s cold, gray and overcast today, with that nice Seattle chill and crisp cool air.
Sunday, 1 October 2006
Up at 7:30 am . Went to New Hope church in Shoreline at 10 am. Steph brought me extra clothes so that I didn’t look like I just came from a bar or something. Ate lots of Hawaiian food at the lu’au afterwards. Watched Jake as Aunty Jane and Steph frantically helped serve food. Drove to Marissa’s afterwards to take a nap. Tara had the same idea, as she was vegging out on the couch. I went in and out of consciousness for the rest of the afternoon. Marissa and Tara left to get coffee at one point. Marissa even went to see an afternoon play with her dad. Tara and I watched the travel channel, the food channel, and Project Runway, as I gave my two cents about every hour, and then two seconds later would fall back asleep. Tara and I went to join Marissa and her parents for dinner at a swanky restaurant called Blackbird, near the Admiral Theatre in West Seattle. Had a lovely Mediterranean salad with ahi and spicy ravioli. Marissa let me borrow her car today. Drove home and went to sleep.
Monday, 2 October 2006
Went to 9:30 am yoga since it’s been about a week since I last went. It was fun to catch up with Amber. She was impressed that I did the 31 day challenge. Felt dizzy and out of it today during class, but I made it through and felt much better afterwards. One gal next to me asked me how long I’ve been practicing. She thanked me as she said she learned a thing or two from my postures today.
Ate leftovers at home for lunch and visited with Aunty Jane and Jake and the new housekeeper Amanda. Went to Sanislo, my favorite school, to visit teacher colleagues and staff and drop off chocolate macadamia nuts. Stayed for a couple hours and then went to the library to check email. Met Sharon and Teresa, kindergarten teachers I taught with at Sanislo, at my favorite Thai restaurant, only it was closed, so we had opted for plan B, which was Indian food. Stuffed ourselves with chicken vindaloo and garlic naan, among other things. We talked about Anna Rae’s first year of college, my dad, and teaching in Hawai’i. Ate pumpkin pie for dessert at home, played with Jake, watched Marissa’s wedding video, and caught up on the phone. Steph and Michael let me borrow socks! So, at least my toes are warm!
Saturday, September 30, 2006
Out and About in Seattle
Saturday, 30 September 2006
Arrived at 6 am (3 am Hawai'i time)into SeaTac airport. Steph, Michael, and Jake picked me up at the airport and we headed straight to their neighborhood Starbuck's for some coffee and pastries. Then, we were off to Target and Costco, to do their family errands. When we got home at noon, I hit a wall. Took a much needed nap from jet lag, and after pho for lunch and a drive around Alki, I was rejuvenated and ready to go in the evening. Michael dropped me off in Capitol Hill to meet my friends. Brought Marissa flowers for her birthday.
Enjoyed a nice meal of some French cicer and dinner and dessert crepes with the gals, before heading off to garage to watch people play pool for a few hours. I chatted and caught up with friends over a few drinks. About ten of us left at the end decided to go get a bite to eat. So, we ended up at Dick's at 2 am where I scarfed down a cheeseburger, oily french fries, and a vanilla milkshake, knowing full well that my body may hate me in the morning.
Tara, Marissa and I ended up at Marissa's house watching Project Runway until 4 am. That couch would be my friend the next day as well...
Arrived at 6 am (3 am Hawai'i time)into SeaTac airport. Steph, Michael, and Jake picked me up at the airport and we headed straight to their neighborhood Starbuck's for some coffee and pastries. Then, we were off to Target and Costco, to do their family errands. When we got home at noon, I hit a wall. Took a much needed nap from jet lag, and after pho for lunch and a drive around Alki, I was rejuvenated and ready to go in the evening. Michael dropped me off in Capitol Hill to meet my friends. Brought Marissa flowers for her birthday.
Enjoyed a nice meal of some French cicer and dinner and dessert crepes with the gals, before heading off to garage to watch people play pool for a few hours. I chatted and caught up with friends over a few drinks. About ten of us left at the end decided to go get a bite to eat. So, we ended up at Dick's at 2 am where I scarfed down a cheeseburger, oily french fries, and a vanilla milkshake, knowing full well that my body may hate me in the morning.
Tara, Marissa and I ended up at Marissa's house watching Project Runway until 4 am. That couch would be my friend the next day as well...
Tuesday, September 26, 2006
Hooray for Intercessions!
Tuesday, 26 September 2006
Now that all public schools in Hawai'i are on year-round school schedules, I can say thank you for intercessions! Our first academic quarter ends this Friday, and as long as the Northwest Airlines flight attendants don't strike that day, I'll be on my way to Seattle for about 9 days. I'll help celebrate Marissa's belated 28th birthday on Saturday at one of my favorite crepes places (although we'll be going there for dinner), then hitting the bars for the nightlife of Capitol Hill, get together with some teacher friends early in the week, find out if Maila is going to pop out a baby while I'm there, try to visit Christy on my way up to Anacortes to visit Christina, Andrew, and Max, and somewhere in between visiting friend's at Jillian's, check out some music, eat Thai food at Buddha Ruska, will probably end up visiting the schools I taught at, hang out at Pike's Place, downtown, and Belltown, and I'll try to fit in some Bikram yoga at the West Seattle studio and pack up/sift through/ship more of my stuff.
Oh yeah, and it looks like I'll probably be taking my laptop with me to work on report cards and a portfolio for a class I took this summer. What fun!..Well, at least that first part.
Now that all public schools in Hawai'i are on year-round school schedules, I can say thank you for intercessions! Our first academic quarter ends this Friday, and as long as the Northwest Airlines flight attendants don't strike that day, I'll be on my way to Seattle for about 9 days. I'll help celebrate Marissa's belated 28th birthday on Saturday at one of my favorite crepes places (although we'll be going there for dinner), then hitting the bars for the nightlife of Capitol Hill, get together with some teacher friends early in the week, find out if Maila is going to pop out a baby while I'm there, try to visit Christy on my way up to Anacortes to visit Christina, Andrew, and Max, and somewhere in between visiting friend's at Jillian's, check out some music, eat Thai food at Buddha Ruska, will probably end up visiting the schools I taught at, hang out at Pike's Place, downtown, and Belltown, and I'll try to fit in some Bikram yoga at the West Seattle studio and pack up/sift through/ship more of my stuff.
Oh yeah, and it looks like I'll probably be taking my laptop with me to work on report cards and a portfolio for a class I took this summer. What fun!..Well, at least that first part.
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