It was such a joy to bring Michael home with me; I thought the next time there were comments to be posted from here, it would be Mike who posted them. There are some things he is not quite ready for yet, but they will come. Recovery is multi-faceted. There is the physiological aspect and the emotional aspect of this enigmatic puzzle. He feels whole, but this has been a time of discovery for him.
He is amazed with each new revelation of family or friends who have uplifted him during this journey. A few days ago, we learned of another group of folks that have been part of the kaleidoscope of caring. It seems the protective shield was so widespread and strong, if his spirit tried to leave us, it must have rebounded right back to us during those awe full weeks.
Blessings to all.
Status:
A few blisters keep appearing here and there on his back and left arm. At his follow up appointment last week, the doctors told us we can expect that for another two months—new skin is very thin. His left hand gets blistered or cut with the least bump. He says it's the only place that looks "melty". Itching is his biggest aggravation.
We are still putting a clear patch over the stoma where the trach was. The doctor dotted a flap of skin with silver nitrate to adjust cell growth. We are expecting it to close completely some time in the next week or so.
His gait is improving. About a week ago, he gained a second gear. I think I’ve even noticed a new ability to accelerate within the last couple days. Getting in and out of chairs is still a bit awkward. Now he can even pull his shirt over his head without help.
He drinks tea with his breakfast rather than coffee to help break one of the rituals that bring the song of the cigarette siren. So far smoking has crossed his mind, but the thought seems to have stopped with that. (As for me, that thought just brings visions of his wounded lungs any time I consider such a thing for him.) Coughing up gunk may be with him for weeks to come.
Although, he isn’t continuously grazing as he did the first week or so, he is still delighted with the flavor of everything. If I go the grocery store alone I’d better have a good excuse. He likes to go with me because they have electric carts and he likes to look at all the food. I really think it's that he has an excuse to play Speed Racer. And, my or my, has he drunk all kinds of brewed, sweet, unsweet, honeyed, and bottled tea as well as all kinds of juice and soda.
He tells anyone who asks, “I’m glad to be here. If it weren’t for the firemen, the people at Parkland Burn Unit, and the prayers of hosts of people, I wouldn’t be here.”
Sunday, August 24, 2008
Wednesday, August 20, 2008
Return to...?
I think sometimes of what Dad is still facing and it forces me to breathe in for extra air. Yes, there are physical challenges, such as a loss of 40% of his muscle mass. But that's nothing that some PT and normal use of his body won't rectify.
He awoke from weeks of fitful slumber and bad dreams into a sort of real nightmare. Right now, he has no home to return to. Which does not, in any way, discount the home he has with his family and friends, but that's not the same thing and I know it.
In some ways, the limbo he's in can be a good thing. It'll help with the habits he wants to kick. Like smoking. Right now, of course, the hacking of gunk throughout the day helps him not want to actually breathe heated smoke from a cigarette into his lungs, but the urge? It's come knocking a few times. He's readily admitted it. So, it's kind of helpful that he doesn't have his own porch to go out to, sit down with a cup of coffee, and have a habitual a smoke. I know for a damn fact, that right now, if Dad managed to lose his mind and actually get a hold of a cigarette somehow, Dixie would tackle him and wrestle it out of his hands like it was a live grenade about to go off in his face. Maybe it's extra incentive for him. To know that, if his own will power gave way, he'd get body-checked by his older sister. Because, let's face it. That'd just be embarrassing.
But no home. The home built by his parents. The home in which an 11-year-old Dixie helped to fill nail holes with wood putty when they built it. No stuff. It's all burned or ruined. No sense of place.
Of course, as far as I'm concerned, you could take all his stuff and my stuff to boot, and light it aflame right in front of me and I'd let it burn if it meant he got to live. So I am not lamenting the loss of stuff. I'm musing on the difficulties yet to come for him, finding where to place his feet as he moves forward in all of this. So much esoteric work for him to do, and he can't even rely on his favorite thinking spots. Could it be a blessing? We all have our own opinions on this, but only he will know for sure. Fifty-four and starting over. Again. What will it be like this time?
I know you wonder why he has not posted himself. He hasn't even been able to read this blog yet. He knows about it, but it's all still pretty overwhelming to him. Dad's doing a great job of living and working through present moments, though, so I'm happy to let him take his time in circling back for six weeks of time in the past.
I love you, Dad. You can do this.
He awoke from weeks of fitful slumber and bad dreams into a sort of real nightmare. Right now, he has no home to return to. Which does not, in any way, discount the home he has with his family and friends, but that's not the same thing and I know it.
In some ways, the limbo he's in can be a good thing. It'll help with the habits he wants to kick. Like smoking. Right now, of course, the hacking of gunk throughout the day helps him not want to actually breathe heated smoke from a cigarette into his lungs, but the urge? It's come knocking a few times. He's readily admitted it. So, it's kind of helpful that he doesn't have his own porch to go out to, sit down with a cup of coffee, and have a habitual a smoke. I know for a damn fact, that right now, if Dad managed to lose his mind and actually get a hold of a cigarette somehow, Dixie would tackle him and wrestle it out of his hands like it was a live grenade about to go off in his face. Maybe it's extra incentive for him. To know that, if his own will power gave way, he'd get body-checked by his older sister. Because, let's face it. That'd just be embarrassing.
But no home. The home built by his parents. The home in which an 11-year-old Dixie helped to fill nail holes with wood putty when they built it. No stuff. It's all burned or ruined. No sense of place.
Of course, as far as I'm concerned, you could take all his stuff and my stuff to boot, and light it aflame right in front of me and I'd let it burn if it meant he got to live. So I am not lamenting the loss of stuff. I'm musing on the difficulties yet to come for him, finding where to place his feet as he moves forward in all of this. So much esoteric work for him to do, and he can't even rely on his favorite thinking spots. Could it be a blessing? We all have our own opinions on this, but only he will know for sure. Fifty-four and starting over. Again. What will it be like this time?
I know you wonder why he has not posted himself. He hasn't even been able to read this blog yet. He knows about it, but it's all still pretty overwhelming to him. Dad's doing a great job of living and working through present moments, though, so I'm happy to let him take his time in circling back for six weeks of time in the past.
I love you, Dad. You can do this.
Friday, August 15, 2008
Seeing is believing
You guys. Wow.
Dad's transformation in the last two weeks is, in a word, miraculous. He had already made such vast improvements by the time I left, but so many things were still worrisome: 2nd bout of pneumonia, tubes, still significant sedation, discomfort from tubes, tubes and more tubes.
And now?
The man walks, talks, eats a steady supply of delicious food (prepared and supplied with love from the magical being known as Dixie), and today, he will begin getting his mind and arms around the actual business around the house. He says he's ready and we've made appointments accordingly.
When I first walked in two nights ago, fresh from getting picked up by Asia at the airport, I opened Dixie's front door and the first thing I heard was his voice from the living room. And even though I had recently been getting a daily conversation with him on the phone, to hear his deep, resonant voice fill the room and carry into the foyer... it was an unbelievable sensation. I could have turned around right then, gone back to the airport, headed back to Denver and could almost have been convinced, sitting in my living room back home, that it all had never happened.
He looks so, so good. All of you who see him next will scan his face, wondering how in the world it was possibly burned. Then you'll see his hand, his arm, his shoulders, and you'll see with certainty how far-reaching the scarring is, but you'll still think to yourself how utterly amazing it is for a human body to heal SO MUCH.
I believe.
I believe that Daddies walk the earth.
I believe that angels live among us,
Saving us,
Holding us,
Helping us,
Loving us.
I believe in miracles
And second chances.
And I belive in you,
and you,
and you.
I know so many of you have had trials and tribulations of your very own in this time and I would like you to know that I hold you, just as you have done for me and our family, in my prayers. You deserve the very best outcomes possible, and you shall have them. They may disguised as a problem now, but I know, I believe in my heart and bones, that blessings will follow.
Dad's transformation in the last two weeks is, in a word, miraculous. He had already made such vast improvements by the time I left, but so many things were still worrisome: 2nd bout of pneumonia, tubes, still significant sedation, discomfort from tubes, tubes and more tubes.
And now?
The man walks, talks, eats a steady supply of delicious food (prepared and supplied with love from the magical being known as Dixie), and today, he will begin getting his mind and arms around the actual business around the house. He says he's ready and we've made appointments accordingly.
When I first walked in two nights ago, fresh from getting picked up by Asia at the airport, I opened Dixie's front door and the first thing I heard was his voice from the living room. And even though I had recently been getting a daily conversation with him on the phone, to hear his deep, resonant voice fill the room and carry into the foyer... it was an unbelievable sensation. I could have turned around right then, gone back to the airport, headed back to Denver and could almost have been convinced, sitting in my living room back home, that it all had never happened.
He looks so, so good. All of you who see him next will scan his face, wondering how in the world it was possibly burned. Then you'll see his hand, his arm, his shoulders, and you'll see with certainty how far-reaching the scarring is, but you'll still think to yourself how utterly amazing it is for a human body to heal SO MUCH.
I believe.
I believe that Daddies walk the earth.
I believe that angels live among us,
Saving us,
Holding us,
Helping us,
Loving us.
I believe in miracles
And second chances.
And I belive in you,
and you,
and you.
I know so many of you have had trials and tribulations of your very own in this time and I would like you to know that I hold you, just as you have done for me and our family, in my prayers. You deserve the very best outcomes possible, and you shall have them. They may disguised as a problem now, but I know, I believe in my heart and bones, that blessings will follow.
Sunday, August 10, 2008
"We Busted Out of That Pop Stand"
The last tube came out at twenty minutes until 5 on Saturday. Did I ever do a happy dance along with Michael doing his version from the bed.
If you try to contact Mike at his new e-mail address, please do not be surprised or concerned if you don’t hear from him quickly. He is doing well and looks great, but he is working on regaining his balance, strength and energy. We are taking things one step at a time over here at recovery central.
Again, our deepest gratitude to all. We've felt your uplifting spirit throughout the making of this ongoing miracle.
God Bless
If you try to contact Mike at his new e-mail address, please do not be surprised or concerned if you don’t hear from him quickly. He is doing well and looks great, but he is working on regaining his balance, strength and energy. We are taking things one step at a time over here at recovery central.
Again, our deepest gratitude to all. We've felt your uplifting spirit throughout the making of this ongoing miracle.
God Bless
Saturday, August 9, 2008
Coming in for a landing
Okey dokey! Last update post before you're able to post something for yourself.
Dixie's on her way to pick you up from the hospital. I'm curious how many hours it will take, from her arrival, to y'all's departure. Both of you have expressed to me how important it is to each of you to feel that they've told you absolutely EVERYTHING possible about what to do for your care in this next phase. Understandable, since, for six weeks (!!), you've had - at least - an attending doctor, a nurse (for most of the time, a dedicated nurse, as in 100% all about you), a dressing nurse, a breathing therapist, a physical therapist, an occupational therapist, an opthamologist, a dietician, a phsycologist, a psychiatrist, a butcher, a baker, a candlestick maker...
This morning on the phone, you and I celebrated that you'd gotten 5+ hours of sleep last night, from 10:30 to 3. And that, at midnight, when the nurse came in to check bp, you were able to drift right back to sleep. Then the traffic began again, and as you said, if you needed anyone, all you had to do was nod off and they'd be right there to wake you up. Hee hee.
[NOTE TO PARKLAND MEMORIAL GENERAL AND BICU STAFF: Thank you for everything you've done. You have been wonderful and you are so good at what you do.]
So, I'm sure it might feel a little shocking to go from all of that, to a more "normal," serene setting. But remember, a lot of those people were assigned to you, not because of your condition upon coming to the hospital, but because of the effects of being in the hospital.
This next phase of healing will, in some ways, be tougher than what you've already been through because it will involve every aspect of your life -- not just your physical one. But I know you're going to be okay, Dad. Just don't try to do everything all at once. You've been on the Bullet Train this last week and a half, but in these next months, remember the phrase I said to you every day those first four weeks:
Little by little, bit by bit.
And now... heeeeeeeere's Daddy!
Dixie's on her way to pick you up from the hospital. I'm curious how many hours it will take, from her arrival, to y'all's departure. Both of you have expressed to me how important it is to each of you to feel that they've told you absolutely EVERYTHING possible about what to do for your care in this next phase. Understandable, since, for six weeks (!!), you've had - at least - an attending doctor, a nurse (for most of the time, a dedicated nurse, as in 100% all about you), a dressing nurse, a breathing therapist, a physical therapist, an occupational therapist, an opthamologist, a dietician, a phsycologist, a psychiatrist, a butcher, a baker, a candlestick maker...
This morning on the phone, you and I celebrated that you'd gotten 5+ hours of sleep last night, from 10:30 to 3. And that, at midnight, when the nurse came in to check bp, you were able to drift right back to sleep. Then the traffic began again, and as you said, if you needed anyone, all you had to do was nod off and they'd be right there to wake you up. Hee hee.
[NOTE TO PARKLAND MEMORIAL GENERAL AND BICU STAFF: Thank you for everything you've done. You have been wonderful and you are so good at what you do.]
So, I'm sure it might feel a little shocking to go from all of that, to a more "normal," serene setting. But remember, a lot of those people were assigned to you, not because of your condition upon coming to the hospital, but because of the effects of being in the hospital.
This next phase of healing will, in some ways, be tougher than what you've already been through because it will involve every aspect of your life -- not just your physical one. But I know you're going to be okay, Dad. Just don't try to do everything all at once. You've been on the Bullet Train this last week and a half, but in these next months, remember the phrase I said to you every day those first four weeks:
Little by little, bit by bit.
And now... heeeeeeeere's Daddy!
Friday, August 8, 2008
The Best
You’re coming home!!
You must have practiced your swallow exercises all night last night because when I left the hospital yesterday, the plan was that on Monday you would have a swallow test while an X-ray followed the progress of the food. When I got there today, you were “down in X-ray” for the test. You passed the test and tomorrow we get our ticket for the next phase of this journey. WooHoo!
It’s been quite a ride so far, brother, and at least the next lap will be taken on familiar ground.
You must have practiced your swallow exercises all night last night because when I left the hospital yesterday, the plan was that on Monday you would have a swallow test while an X-ray followed the progress of the food. When I got there today, you were “down in X-ray” for the test. You passed the test and tomorrow we get our ticket for the next phase of this journey. WooHoo!
It’s been quite a ride so far, brother, and at least the next lap will be taken on familiar ground.
Thursday, August 7, 2008
Day 40: The important things
Love
Faith
Voice
Time
Jell-O
People
Health
Family
Friends
Iced Tea
Kindness
Patience
Patients
Breath
Sleep
Skin
Consciousness
Lungs
Eyes
Smiles, wherever they may live.
Dads
Daddies
and Daddios
Pappas
Padres
and Patriarchs
I will not,
Can not
Think of these things
Ever in the same way again.
Faith
Voice
Time
Jell-O
People
Health
Family
Friends
Iced Tea
Kindness
Patience
Patients
Breath
Sleep
Skin
Consciousness
Lungs
Eyes
Smiles, wherever they may live.
Dads
Daddies
and Daddios
Pappas
Padres
and Patriarchs
I will not,
Can not
Think of these things
Ever in the same way again.
Wednesday, August 6, 2008
Bullet Train
We decided you felt as though you've been on the bullet train today. I am ecstatic! First things first-you slept better last night. Your dreams weren't nearly as bizarre. Your day began with a shower very early this morning. You reported that you got one yesterday as well and it felt like a spa treatment. Having your hair washed seemed to be the height of luxury to you. You look fantastic!
You moved to "the floor" (another 'medical term'). You are in room 669, bed 1. The speech team came to give you a swallow test with a camera. You must have passed because not only did you get to have some Jell-O, as predicted, you got to try potato, spinach and broccoli soup. You still can't have liquids, expecially milk, but the therapist promised to bring you..... DRUM ROLL-tea!
for your test tomorrow. She even asked if you wanted sweet or unsweet. You took a short stroll down the hall with the beautiful Jessi and her pal. What an accomplishment. You are now almost tubeless; you an IV in one hand and the "food toob". You got to report to your three brave muskateers over the telephone.
Now for the piece de resistance--the trach is out!! Imagine! Two doctors came into the room, asked you to sit up on the side of the bed and announced that they were going to take out the trach. We both gasped! You just kept lying there. We were both stunned. They tried again. "Whoa, whoa, whoa! You all know the plan, but I just woke up a few days ago. I need for you to back up and explain this plan."
"You mean you just stand right here and pull it out?!" I croaked.
" Yep. Then we put some treated gauze over it and tape it down, and it closes off on its own. You'll be able to breath and eat just fine. It will take a bit of getting used to. You might have a bit of difficulty talking. Give it a few hours." Both of us were nervous, but I patted you on the shoulder hoping you wouldn't realize how I felt. I tried to sound reassuring when I told you that they doctor had explained this when they put it in.
Well, you were a bit anxious for a while, but by the time I left this evening, you were talking fine. So who's surprised?
Now we know what riding the bullet train is like.
This writing to you about you now that we can actually converse, is feeling rather goofy. I may have to make an adjustment.
What a red letter day, brother.
You moved to "the floor" (another 'medical term'). You are in room 669, bed 1. The speech team came to give you a swallow test with a camera. You must have passed because not only did you get to have some Jell-O, as predicted, you got to try potato, spinach and broccoli soup. You still can't have liquids, expecially milk, but the therapist promised to bring you..... DRUM ROLL-tea!
for your test tomorrow. She even asked if you wanted sweet or unsweet. You took a short stroll down the hall with the beautiful Jessi and her pal. What an accomplishment. You are now almost tubeless; you an IV in one hand and the "food toob". You got to report to your three brave muskateers over the telephone.
Now for the piece de resistance--the trach is out!! Imagine! Two doctors came into the room, asked you to sit up on the side of the bed and announced that they were going to take out the trach. We both gasped! You just kept lying there. We were both stunned. They tried again. "Whoa, whoa, whoa! You all know the plan, but I just woke up a few days ago. I need for you to back up and explain this plan."
"You mean you just stand right here and pull it out?!" I croaked.
" Yep. Then we put some treated gauze over it and tape it down, and it closes off on its own. You'll be able to breath and eat just fine. It will take a bit of getting used to. You might have a bit of difficulty talking. Give it a few hours." Both of us were nervous, but I patted you on the shoulder hoping you wouldn't realize how I felt. I tried to sound reassuring when I told you that they doctor had explained this when they put it in.
Well, you were a bit anxious for a while, but by the time I left this evening, you were talking fine. So who's surprised?
Now we know what riding the bullet train is like.
This writing to you about you now that we can actually converse, is feeling rather goofy. I may have to make an adjustment.
What a red letter day, brother.
Tuesday, August 5, 2008
Rip Van Winkle No More
Today brought tears of gratitude for your support system. We’re so grateful for family and friends. I told you that you can’t even imagine the amount of prayers and well wishes you have been getting.
Your vocalization is great. We’re trying to meet a new challenge; about 6 weeks of high dollar sedation and pain medication have been pumped into your body and slowly but surely that drip has become less and less powerful. Today those drips are no more. Not only that, you continue to have antibiotics, Zantac, insulin, finger pokes, physical therapy, breathing therapy, racking coughing, and numerous other tasks to perform or be performed on you. After being Rip Van Winkle, you’re now fully aware, you’re being bombarded with information. No wonder you have a sense of confusion!
Today's the day we got some glycerin swabs. I’ve asked for them in two different rooms. When you told Patsy that your lips felt like you’d been walking on Mt. Everest in a headwind and wished you had some glycerin swabs, she asked about them. I told her we knew about some swabs that were similar to ones in a container on the counter only they are saturated with glycerin. You explained that when our mother was dieing, we had taken turns moistening her mouth with some. Off she went and brought us a small supply. You used on immediately. Nice.
Finally, after days of requests, Patsy, bless her heart, got the information for us that your X-rays over a week’s time show improvement and your cultures show improvement in the white cell count. Progress really IS being made on the pneumonia. I am so relieved, but it seems we may have a few more days of ICU. This brings a funny incident to mind. We've traded places. You cautioned me to put my gloves back on and to not touch my mouth with my hands!! You don’t want me to have pneumonia with you. LOL
We’re gettin there, brother.
Your vocalization is great. We’re trying to meet a new challenge; about 6 weeks of high dollar sedation and pain medication have been pumped into your body and slowly but surely that drip has become less and less powerful. Today those drips are no more. Not only that, you continue to have antibiotics, Zantac, insulin, finger pokes, physical therapy, breathing therapy, racking coughing, and numerous other tasks to perform or be performed on you. After being Rip Van Winkle, you’re now fully aware, you’re being bombarded with information. No wonder you have a sense of confusion!
Today's the day we got some glycerin swabs. I’ve asked for them in two different rooms. When you told Patsy that your lips felt like you’d been walking on Mt. Everest in a headwind and wished you had some glycerin swabs, she asked about them. I told her we knew about some swabs that were similar to ones in a container on the counter only they are saturated with glycerin. You explained that when our mother was dieing, we had taken turns moistening her mouth with some. Off she went and brought us a small supply. You used on immediately. Nice.
Finally, after days of requests, Patsy, bless her heart, got the information for us that your X-rays over a week’s time show improvement and your cultures show improvement in the white cell count. Progress really IS being made on the pneumonia. I am so relieved, but it seems we may have a few more days of ICU. This brings a funny incident to mind. We've traded places. You cautioned me to put my gloves back on and to not touch my mouth with my hands!! You don’t want me to have pneumonia with you. LOL
We’re gettin there, brother.
Dads say the darndest things
I haven't experienced your coversations for myself, but from what I'm hearing, the nurse (Robby, I believe) was right all those weeks ago about what you'd do, coming off these drugs they've had you on. You're saying some spaced-out stuff, Daddio.
You said that you hope Dubya gets another go in office.
Just kidding. This blog is no place for politics talk.
I think the more bizarre things that you've said have to do with the very vivid dreams you're now able to remember when you wake. Only you can't quite tell that they were just dreams. Like the other night, when in your food-deprived state, you conjured up some sort of grill party the nursing staff was having right outside your room. Taunting you with the smell of grilled onions and such. You told Dixie, you were a little angry with them for doing that to you. Uh, I would be, too! But it didn't really happen. Your milky way drug galaxy and your back-to-Earth reality are starting to separate and it's tough to tell where one ends and the other begins.
You had another dream last night. You told Asia about it this morning. You said that somewhere in it, you actually figured out that it was just a dream. It was a pretty convoluted plot, lots of apocolyptic consequences, but ultimately, you figured out it was only a dream because, as you put it, "I'm not this important!" Well, you're that important to us. It certainly felt apocolyptic when we thought we could lose you, but yes, it was only a dream and your compass is starting to find its magnetic north again.
This is all fascinating to me, but I know you'll be glad when this part, too, is over. I continue to be amazed at all the stops a body, mind and spirit have to make along the way to full recovery. You'll be out of MidWorld soon.
Can't wait to hear what today brings...
You said that you hope Dubya gets another go in office.
Just kidding. This blog is no place for politics talk.
I think the more bizarre things that you've said have to do with the very vivid dreams you're now able to remember when you wake. Only you can't quite tell that they were just dreams. Like the other night, when in your food-deprived state, you conjured up some sort of grill party the nursing staff was having right outside your room. Taunting you with the smell of grilled onions and such. You told Dixie, you were a little angry with them for doing that to you. Uh, I would be, too! But it didn't really happen. Your milky way drug galaxy and your back-to-Earth reality are starting to separate and it's tough to tell where one ends and the other begins.
You had another dream last night. You told Asia about it this morning. You said that somewhere in it, you actually figured out that it was just a dream. It was a pretty convoluted plot, lots of apocolyptic consequences, but ultimately, you figured out it was only a dream because, as you put it, "I'm not this important!" Well, you're that important to us. It certainly felt apocolyptic when we thought we could lose you, but yes, it was only a dream and your compass is starting to find its magnetic north again.
This is all fascinating to me, but I know you'll be glad when this part, too, is over. I continue to be amazed at all the stops a body, mind and spirit have to make along the way to full recovery. You'll be out of MidWorld soon.
Can't wait to hear what today brings...
Monday, August 4, 2008
Momentous Day
Voice!
Ginger Ale!
Mike said, “Hi. He loves
everybody. ”
Nikky was with me today. Since you are back in the BICU, we got suited up to come in. When we got in the room, you motioned for us to bring the chair over and for me to sit down in it. Then I heard, “I wanted you to sit down for this.” Of course, I jumped up. “Oh my God, oh my God! You can talk!!!” That’s when I noticed the red cap in your trach. I can’t believe I didn’t notice it right away! You said, “I got some ginger ale too.”
“Was it nectar of the gods?”
“Oh my God. They told me go ahead, take a sip. Then I crunched on the ice. They told me it was OK, but I said, “I’ve got to feel every molecule.”
Then you made and snatching motion, “Then they said, ‘OK, you’ll get more tomorrow,” shook your head and grinned.
You also got to try a little applesauce and a bit of graham cracker. It's a slow go, because they can't take a chance on anything getting into the lungs. You've got to learn to swallow again.
Day Thirty Seven: I heard my brother’s voice. When I told you I'd go home and put it on the blog right away, you said, "Put Mike said Hi. He loves everybody."
The physical therapist said you could manage the technique right after the speech people taught you what to do. She said most people do a little at a time over a few hours. We’ve been telling them you’re a talker.
Hear you tomorrow brother.
Ginger Ale!
Mike said, “Hi. He loves
everybody. ”
Nikky was with me today. Since you are back in the BICU, we got suited up to come in. When we got in the room, you motioned for us to bring the chair over and for me to sit down in it. Then I heard, “I wanted you to sit down for this.” Of course, I jumped up. “Oh my God, oh my God! You can talk!!!” That’s when I noticed the red cap in your trach. I can’t believe I didn’t notice it right away! You said, “I got some ginger ale too.”
“Was it nectar of the gods?”
“Oh my God. They told me go ahead, take a sip. Then I crunched on the ice. They told me it was OK, but I said, “I’ve got to feel every molecule.”
Then you made and snatching motion, “Then they said, ‘OK, you’ll get more tomorrow,” shook your head and grinned.
You also got to try a little applesauce and a bit of graham cracker. It's a slow go, because they can't take a chance on anything getting into the lungs. You've got to learn to swallow again.
Day Thirty Seven: I heard my brother’s voice. When I told you I'd go home and put it on the blog right away, you said, "Put Mike said Hi. He loves everybody."
The physical therapist said you could manage the technique right after the speech people taught you what to do. She said most people do a little at a time over a few hours. We’ve been telling them you’re a talker.
Hear you tomorrow brother.
Sunday, August 3, 2008
Sunday Number Six
Here we go again. The ICUs are fighting over you, I think. Everybody brags on what a good patient you are so I guess they don’t like it if one ICU has the pleasure of your company for too long. It’s back to the BICU this evening. I was very glad it didn’t happen earlier in the day because we had a nice long visit again today.
Yep. More animals. As soon as I began digging in my bag and telling you that Robin had sent me with your power animal, you nodded. We read it together. Not surprisingly, it was a big hit with you; you requested it be placed on your blog. I was pleased you remembered about the blog. They’ve lightened the sedative and the pain medication drip. After you took a nap from your morning work out in the chair, you were wide awake for quite a while this afternoon.
I told you about stopping by the house a few times and seeing hummingbirds. I still have the same only two hummingbird bushes, but you have trained your volunteers into a lovely privet hedge. Four different times I’ve been sitting on the bench outside when one has helicoptered in for a meal. I realized hummers should be included with hawks as omens for good.
Poppy, the respiratory therapist, came in again today to give you another breathing treatment. When I told her that you had written that it is scary to have that machine take over so much of your breathing, she tested your oxygen level. We joked about maybe it seemed like the Borg to you. She asked if I was a Trekkie. I admitted not exactly, but I had a son in law who certainly qualifies. You worked hard at taking deep breaths and expelling lots of air. You raised the level of the gauge up to 2000. She said that ordinarily a healthy person of your age and height should be able to raise it to 3000, so she was impressed. She determined that you probably don’t need that machine to assist with your breathing treatments any more and made sure you had your new device to take for your return to the BICU. She’s another sweetie. For now, they can give the Albuterol through the trach. You didn’t mind that. You got a shot of Heparin in the tummy (very small needle Kelly assured me) and liquid Zantac into the IV tubing. That’s SOP for all ICU patients.
Randall let me know that you still have lots of secretions so she suspects it may be a little longer before the trach can be adapted for talking and for food. You’re doing an amazing job of being patient. I have to work at it. You did write that today you’re thinking of all kinds of sherbet and ice cream. I told you the story of our trip to Disney World. Chad has long corrected our pronunciation of that icy treat. When someone decided on sorbet for dessert and someone considered sherbet, I suggested it must be “sherbay” so Chad said that was the name for this family from now on. I’m off to make room in the freezer for lots of flavors of ice cream, sorbet, and sherbay. See you tomorrow.
Status: Oxygen 100% Temperature normal
Yep. More animals. As soon as I began digging in my bag and telling you that Robin had sent me with your power animal, you nodded. We read it together. Not surprisingly, it was a big hit with you; you requested it be placed on your blog. I was pleased you remembered about the blog. They’ve lightened the sedative and the pain medication drip. After you took a nap from your morning work out in the chair, you were wide awake for quite a while this afternoon.
I told you about stopping by the house a few times and seeing hummingbirds. I still have the same only two hummingbird bushes, but you have trained your volunteers into a lovely privet hedge. Four different times I’ve been sitting on the bench outside when one has helicoptered in for a meal. I realized hummers should be included with hawks as omens for good.
Poppy, the respiratory therapist, came in again today to give you another breathing treatment. When I told her that you had written that it is scary to have that machine take over so much of your breathing, she tested your oxygen level. We joked about maybe it seemed like the Borg to you. She asked if I was a Trekkie. I admitted not exactly, but I had a son in law who certainly qualifies. You worked hard at taking deep breaths and expelling lots of air. You raised the level of the gauge up to 2000. She said that ordinarily a healthy person of your age and height should be able to raise it to 3000, so she was impressed. She determined that you probably don’t need that machine to assist with your breathing treatments any more and made sure you had your new device to take for your return to the BICU. She’s another sweetie. For now, they can give the Albuterol through the trach. You didn’t mind that. You got a shot of Heparin in the tummy (very small needle Kelly assured me) and liquid Zantac into the IV tubing. That’s SOP for all ICU patients.
Randall let me know that you still have lots of secretions so she suspects it may be a little longer before the trach can be adapted for talking and for food. You’re doing an amazing job of being patient. I have to work at it. You did write that today you’re thinking of all kinds of sherbet and ice cream. I told you the story of our trip to Disney World. Chad has long corrected our pronunciation of that icy treat. When someone decided on sorbet for dessert and someone considered sherbet, I suggested it must be “sherbay” so Chad said that was the name for this family from now on. I’m off to make room in the freezer for lots of flavors of ice cream, sorbet, and sherbay. See you tomorrow.
Status: Oxygen 100% Temperature normal
Phoenix and camels and hawks, oh my!
"The camel is a wonder of self-containment and self-sufficiency, able to survive long periods of time just on what is contained within.... Camel energy is infused with health and vitality, giving you a vibrant immune system and the power to heal yourself. "
Robin found this "power animal" and she shared it with Dixie, who read the whole write-up out loud to you. You really liked it, and you've made it clear that you'd like it on the blog. So I posted the excerpt above.
Robin found this "power animal" and she shared it with Dixie, who read the whole write-up out loud to you. You really liked it, and you've made it clear that you'd like it on the blog. So I posted the excerpt above.
Dad. You have come so far in a week. I am amazed. And when I look, too, back at some of the entries and what we considered a good day in the beginning...
I'd like to thank Dixie and Robin for keeping the detailed updates coming. I can't get enough of them. Are you getting dizzy from all the animals we're writing about? Mascots and power animals. You're a zoo.
So, here's something really bizarre:
While I was in Texas, the marketing company I work for landed a new client. They'd been working on landing this client before I left, but I never really knew much about the company or what it did. I just knew it was "healthcare," which is a little different than most of our clients, who are high-tech hardware and software companies.
So, the last week I was in Texas, I learned that the client had, indeed, chosen us to do some strategic and creative work for them, and the segment of their products that we'll be working on? RESPIRATORY CARE. Not only that, but I have been assigned as the lead writer.
Ventilators. CPAP machines.
I'd spent four weeks taking a crash course on the reality side of ventilator technology, and now, I would be writing about this stuff, gearing copy to speak to the caregivers (doctors, administrators, therapists) and convince them that these vents or CPAP machines or what have you, are the products that will give them peace of mind to use for their patients.
Here's another twist: One of the things that this company has that they feel puts them over and above the competition? A technology that helps to prevent pneumonia in patients on the vents.
Well, I don't know about you, but that sure gets MY attention.
Okay. It's been 43 hours since I've spoken on the phone to Dixie. I just finished with the Denver Post Underground Music Showcase last night. (The one Asia and I worked together last year.) It was a lot of fun and hard work. I think you all should come up for it next year.
Dixie is with you as I type, probably inventing new iced tea flavors with you...
I'll be home to see you and the new phoenix wings you're growing in T-minus 10 days.
Saturday, August 2, 2008
Plan for the future-Iced Tea and more of it
Because we spent the central portion of this Saturday together today, it would take three pages to describe it. I’ll leave that until another time and put the condensed version this evening. I brought the dry erase board that Byron bought for you. It helps. We talked about both of us being ready for you to come home with me soon. You wrote: iced tea—sweet, unsweet, raspberry, peach, pear, green, mint..... I told you we’ll get all the flavors you can think of and all the ice you want and some flavors you’ve never thought of. I reminded you that Shanna says that you can have swabs of water for your mouth every hour, but not more because we can’t take a chance on fluid getting into your lungs. You’ve got way too much as it is. You sat in the chair more than two hours today. As soon as you were settled in it, you began the exercises that the therapists have given you. You had a breathing treatment while you were sitting there. Wish we had a movie of the contortions the RT was going through to get you all hooked up!
You wrote that it’s scary to have the machine controlling your breathing. So we had a discussion about how long you were on a ventilator with a wad of plastic in your mouth and your mouth getting sore, then discussed the time after the tracheotomy and having a machine control your breathing through the tracheostomy. You just shook your head in amazement. The respiratory therapist assured us that the full time ventilator days are gone. WooHoo!
You took some good naps today.
Since you can’t talk, you reach out to shake hands with anyone who has done something new to take care of you. It’s so reassuring to see my sweet brother being who he is instead of my brother simply lying in bed trying to heal from the inside out. Now your work has begun as a concentrated effort on your part. You’re doing a great job. I love you; see you tomorrow.
Status: Oxygen level: anywhere from 89 to 100% depending on coughing etc. Mostly in upper 90s -- doing very fine
Temperature normal Sedations remain on the drip system at the same level for the past four/five days
You wrote that it’s scary to have the machine controlling your breathing. So we had a discussion about how long you were on a ventilator with a wad of plastic in your mouth and your mouth getting sore, then discussed the time after the tracheotomy and having a machine control your breathing through the tracheostomy. You just shook your head in amazement. The respiratory therapist assured us that the full time ventilator days are gone. WooHoo!
You took some good naps today.
Since you can’t talk, you reach out to shake hands with anyone who has done something new to take care of you. It’s so reassuring to see my sweet brother being who he is instead of my brother simply lying in bed trying to heal from the inside out. Now your work has begun as a concentrated effort on your part. You’re doing a great job. I love you; see you tomorrow.
Status: Oxygen level: anywhere from 89 to 100% depending on coughing etc. Mostly in upper 90s -- doing very fine
Temperature normal Sedations remain on the drip system at the same level for the past four/five days
Friday, August 1, 2008
Talk Again
Hey, Unc. It's me again. Word on the street is you're startin' to communicate. That's amazing, and I can't wait 'til you're back on your feet again. But I guess that's for another day. It's cool, though. I'm just here to talk to you anyways.
So, summer Band has started up again, and it's a total blast. Today and yesterday was our "Fish Camp", in which the student leaders teach and guide the incoming freshmen in the ways of Marching Band. This year, we've got awesome kids. (Unfortunately, the clarinets kind of have the memory span of a gold fish. But, that's okay! They're still gettin' it!) But so far, they're absolutely amazing. They just have to keep doin' what they're doin', and man, we'll be takin' home the gold!
Uh, also, I mentioned student leader...Yeah, I'm a T.A. (Teacher's Assistant) this year. So I was one of those people teachin' the Fish...And it felt awesome. (For more than one reason, but, honestly? It was great not being in their position. I'm horrible, I know.)
I think this'll be a good year. Hopefully. I wish you well, Uncle, and I send you love.
So, summer Band has started up again, and it's a total blast. Today and yesterday was our "Fish Camp", in which the student leaders teach and guide the incoming freshmen in the ways of Marching Band. This year, we've got awesome kids. (Unfortunately, the clarinets kind of have the memory span of a gold fish. But, that's okay! They're still gettin' it!) But so far, they're absolutely amazing. They just have to keep doin' what they're doin', and man, we'll be takin' home the gold!
Uh, also, I mentioned student leader...Yeah, I'm a T.A. (Teacher's Assistant) this year. So I was one of those people teachin' the Fish...And it felt awesome. (For more than one reason, but, honestly? It was great not being in their position. I'm horrible, I know.)
I think this'll be a good year. Hopefully. I wish you well, Uncle, and I send you love.
Oncoming Tasks and New Doctors
I confess a slight feeling of abandonment today. The doctors that we have learned to trust and respect are moving to a new assignment. It is the first of the month and it seems an entire new team of doctors rotate to the Burn Unit so we’ll have new names and faces to get to know. Dr. Esteroff was making rounds with Dr. Muralirat J. He introduced himself to you then kindly mentioned to both of us that “the speech people” will come visit with you. He told me that they are good at working with the trach. He is beginning to plan the next steps for you. Talking and having some food may be coming up. Oooh, Jell-O: YUM. I have a feeling any flavor will taste good to you after more than a month of nothing by mouth except a wad of plastic.
It seems you can give your sister the raspberries. I was somewhat skeptical yesterday when you wrote, “They made me sit in a chair for an hour and a half.” It seemed way too big a leap from the previous day to me. Today when I got to your room, you were sitting in a special chair, foot twitching. Shanna, your lovely nurse for today, said you had been sitting up for about and hour and 20 minutes. You waved your arm, shook your head, and starting doing the right hand count down. Five, ten, fifteen, ….. forty. Forty minutes more than an hour? Head nod. Shanna looked at the clock you were watching and acknowledged that you were keeping tabs on her. She said that it really helps your lungs to sit up. She reported, “A lot, I mean a lot of fluid is on his lungs and this helps him cough it up.” She gave you an injection of blood thinner. She explained that nearly all their ICU patients get that.
“To ward of blood clots?” “Exactly”
I waited outside while she gave you a bath and got you into a fresh bed. Boy, were you zonked when I returned. We held hands for a while. When I told you I’d see you tomorrow and said, “I love you,” you replied in kind. Progress squared. Hooray.
Status: No more PEEP Oxygen: 99% Temperature: normal
It seems you can give your sister the raspberries. I was somewhat skeptical yesterday when you wrote, “They made me sit in a chair for an hour and a half.” It seemed way too big a leap from the previous day to me. Today when I got to your room, you were sitting in a special chair, foot twitching. Shanna, your lovely nurse for today, said you had been sitting up for about and hour and 20 minutes. You waved your arm, shook your head, and starting doing the right hand count down. Five, ten, fifteen, ….. forty. Forty minutes more than an hour? Head nod. Shanna looked at the clock you were watching and acknowledged that you were keeping tabs on her. She said that it really helps your lungs to sit up. She reported, “A lot, I mean a lot of fluid is on his lungs and this helps him cough it up.” She gave you an injection of blood thinner. She explained that nearly all their ICU patients get that.
“To ward of blood clots?” “Exactly”
I waited outside while she gave you a bath and got you into a fresh bed. Boy, were you zonked when I returned. We held hands for a while. When I told you I’d see you tomorrow and said, “I love you,” you replied in kind. Progress squared. Hooray.
Status: No more PEEP Oxygen: 99% Temperature: normal
Weird dream...
I have had, I'm sure, many dreams since all of this started, but for some reason have not been able to remember them in the morning.
After feeling so improvement in you yesterday -- even across the miles -- I dreamt and remembered it last night.
You were in a cave. And you were stuck in there, cold and in danger of hypothermia. I could hear you through the rocks, but could not get to you from the outside. You said, "Go get someone!" And I was worried that you might not be okay if I left, but you said, "Go get someone!"
So I did.
I went to a greenhouse. They sold plants and flowers and the like. And somehow, I knew that they had a "cave specialist." But I was dubious as to whether or not he'd be available. To my relief they said, "Oh, yeah. He's right here." And they motioned for him to come over.
So, with the cave specialist in tow, I returned to the cave, but, as dreams like to do, the circumstances had changed, and suddenly, you were with me. And I was so relieved! Then, I turn around for a second, and you were gone! "He's stuck in the cave again," I was told. WHAT? HOW? "There was a little baby bat that was having a hard time and your dad wanted to help him." And sure enough, there was your voice again, from inside, yelling, "Go get someone." But this time I wasn't worried, because the cave specialist was right there. And I knew he would do whatever cave specialists do and you'd be fine.
Wonder what today will bring? In the cave, or out?
After feeling so improvement in you yesterday -- even across the miles -- I dreamt and remembered it last night.
You were in a cave. And you were stuck in there, cold and in danger of hypothermia. I could hear you through the rocks, but could not get to you from the outside. You said, "Go get someone!" And I was worried that you might not be okay if I left, but you said, "Go get someone!"
So I did.
I went to a greenhouse. They sold plants and flowers and the like. And somehow, I knew that they had a "cave specialist." But I was dubious as to whether or not he'd be available. To my relief they said, "Oh, yeah. He's right here." And they motioned for him to come over.
So, with the cave specialist in tow, I returned to the cave, but, as dreams like to do, the circumstances had changed, and suddenly, you were with me. And I was so relieved! Then, I turn around for a second, and you were gone! "He's stuck in the cave again," I was told. WHAT? HOW? "There was a little baby bat that was having a hard time and your dad wanted to help him." And sure enough, there was your voice again, from inside, yelling, "Go get someone." But this time I wasn't worried, because the cave specialist was right there. And I knew he would do whatever cave specialists do and you'd be fine.
Wonder what today will bring? In the cave, or out?
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