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.
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