Holiday Cards Inspired by This Blog and YOU!

Dad's ordeal seems like a lifetime ago. And although his news hasn't been the best lately, since he's had to say goodbye to his loyal, loving golden retriever Bonnie, in all, things are on the up and up. In a couple weeks, Dad will fly up here to Denver for a nice long weekend and then he, Lee and I will all drive down to Fort Worth in time for Thanksgiving. I'm really looking forward to spending some quality time with Dad.

My friend Jen and I have been working on a little project. She is a graphic designer and she and our friends Cheryl and Lauren wanted to do something that might help Dad. Jen was touched by this blog and, in particular, the entry about decorating the Christmas tree, so we decided to create a set of holiday greeting cards. We ended up with four beautiful designs:

• The "twinkler" ornament that I described in the blog entry
• An homage to our community here in Denver, who have been so supportive of me and my family
• A cute card that highlights several New Year traditions (maybe you'll see your favorite in there!)
• A thank you card, inspired by how grateful this whole process has made me feel

If you're interested, visit Jen's site (http://www.etsy.com/shop.php?user_id=6409563), or click on any of the images of the cards below. If you're in Texas and you don't mind waiting, you can order through me and skip the shipping, and I'll bring them with me when I come home for Thanksgiving! Email me at gerree dot hinshaw at gmail dot com. (Cards come in packs of 10 for $12.)

Bonnie's gone

There goes my baby, there goes my sugah...so long my ragtime gal

Bonnie went peacefully yesterday, around noon, eight days after her twelfth birthday. Some of you have sent private messages full of warm condolence, for which I am grateful. Thank you.

* * * * * * *

Who can plumb the depths of grief?

Those with heart and mind askew,

Who can taste disease...

Persimmon glazed with hospital dew.

And touch the echoes' burn, laced with

Distant joy, sunlight and breeze.

Our Last Adventure

Despite my foolish but understandable hope, I got the official word from the vet today: Bonnie has mammary cancer, and the only question is how far it has spread. We're not talking about cure but rather heroic, stop-gap measures that would perhaps buy weeks or months. From there, we're talking about quality of life and what's available to keep her as comfortable as possible until the aggressive cancer makes her suffer too much to stay with us.

I did not know this until today, minutes ago, but I have inadvertently hastened her death by not getting her spayed. I don't know WHY I didn't know this, but I didn't. In fact, I thought it was better for her health to NOT get spayed, even though all the "abandoned animal" activists urge pet owners to spay and neuter their perts. I had no idea I was contributing to her otherwise early death. I could have foregone any number of litters of adorable pups. I am simply shattered--devastated of course that her time has finally come, yet all we pet owners live with the inevitable. But to know I missed a huge health risk like this is terrible knowledge. It's a bitter, bitter pill to realize I've sped up the inevitable.

We've had such wonderful times together, not only she and I, but she and our family. Camp dog, river dog, watchdog at home and on the job, companion at home and fellow traveler on the road... since I first saved her life after chewing a toxic plant when she was not much bigger than my houseshoes until the day we were reunited after my release from the hospital, she has asked no more than to be near. If she had a job she could do, why, that was even better... Majestic in bearing, loving in spirit and protective by nature, she has contributed more to the world than some people do and certainly, immeasurably more to us and to me, specifically.

I'm very thankful for these past few weeks we've had together; I know she wondered where I went when all of you were so worried about me and praying for me and taking care of me and so happy for me to recover. And I'm grateful for hers and Doc's having a safe place to stay while I was gone: had she gotten out and been run over--or worse--while I was out of commission, I just don't know what I would have done. That in no way trivializes poor Scout's death in the same fire that nearly got me. It's simply that, truly, I could never have imagined when we brought her home as a pup how attached and emotionally involved I would become with this lovely golden darling.

She has a bed that I put in the truck then bring inside the motel room when we return. The medicine they gave me last week allows her to get around again. Of course, it's hard to say whether it's painless mobility--or relatively painless, because Goldens are one of the breeds that vets call stoic. Regardless, for the moment she's able once again to do what she most loves: get in the truck and...go...somewhere, anywhere ... facing into the wind, calibrated, alert and happy to see what's coming next.

Tomorrow we visit the vet again, to map out the coordinates for what remains in our great adventure.

She's napping right now, a few feet from me, as always--ready by the door. So, today... here in a few minutes, we'll load up one more time and just go see what we can see. I expect I'll have to pull over quite a bit for safety's sake, as I can't possibly cry all this out in one, extended session. But that's OK. She'll lick my tears, and I'll hug her neck and I'll realize once again how lucky I am for my own life to be sure but also to have known such a sweet and gentle soul...

Some Things I Can Do

I visited Bob Compton and Judy Gordon this past Thursday. Some of you will recognize the pattern of the golden ratio at work here.

Compton remains the best boss I've ever had, and much beyond that he remains a champion of solid reporting and good writing. He joined The Dallas Morning News in 1956 and retired from there in 1998, probably best known as the longtime, highly literate Book Editor of the News. Judy and late husband Roxy are cherished among certain indie publishing circles as the nagual antithesis to what John Graves has called the “blockbuster syndrome.”

By any measure, it was an extremely satisfying visit. I was reminded of an Encino Press (see William Wittleff) release of Roxy’s called, Some Things I Did. In that spirit, here’s some things I can do, now:

1. Handle plastic food cartons, letters, notepads, etc., and grocery sacks, without fear of severe paper cuts;

2. Dress myself, for several weeks now, with almost full rotation of my right shoulder and much improved rotation of my left--this was still hop-skip-and-a-bounce when I left Dixie’s for Robin’s place;

3. Cook for myself, which I hardly dared while still at Dixie’s and Byron’s house, for fear of anything hot splashing onto any part of my skin, either healing or unburnt--I simply could not deal with a new burn (more on this later);

4. Now I can open either canned drinks or liter sizes--before, the skin on my fingertips of both hands was too tender to either torque a liter-size bottle-cap or to leverage the flip-top on a canned drink. I had to use “tools” as best I could improvise;

5. Drive my truck--the first time I drove, the steering wheel ripped flesh off my hand as I cornered. That’s no longer a problem.

6. Manage most of my bills and finances. At first, the “information glut” of what was due and what might be overdue and what could be pending and what might get canceled and what is really important was overwhelming. This is, of course, sort of like the hospital joke about “can I play violin?” because I couldn’t play violin in the first place. Still I’m getting better…

7. Ladders. Yup! I can climb ladders. Not with great agility, yet, but without scary awkwardness, thank you verrrr much

8. Tools. Yup! I can make most of my hand tools conform to my will.

9. In other words ==> YAY! I can work.

In fact, I have worked, three days in the past week. I hooked up the primaries to two transformers and the secondary loops inside the attic of a building for neon on a new sushi restaurant not far from the motels where I’ve been staying.

It’s a good feeling to be back at work. I thank each of you for your support.

PS: Got paid tonight--another first, my first since immediately before the fire: In that light, you can imagine how valuable your donations have been…

Cheers for being blister free

I’m so happy to see that you have waded your way through the mud of emotions, reactions, and maneuvers your body was relearning to feel like posting on the blog, Mike. I have to respond that most, if not all, of the medical folks in ICU were not only wonderful but exceptional. Not only that, most with whom I dealt including several of the respiratory therapists, kept telling us how cooperative you were and that they enjoyed working with you to help you recover. We often heard, "He's a good guy." During the last week or two of your hospital stay, several people enjoyed trading little jokes with you. They really got a kick out of your sense of humor.

Byron and I have just returned from a trip into Quebec City, across part of New Brunswick by train, then into Nova Scotia. Wow, what a treat! Although we had watched him make a lot of improvement, it was still difficult to tell Michael, "See ya in two weeks." Thanks to Robin we knew Mike was in good hands. Thanks, “Sis”.

It was wonderful to find you blister free and looking fantastic upon our return, brother. There was only one blister on your shoulder when we left. I was happy to learn that no more had bubbled up after that, and that the skin on your hand has become a little smoother. I keep seeing you back up to a door jamb to do your imitation of a bear scratching his back so it seems the itching will be part of life.

A Father Responds

Oh…GerReasy. What have you done?

To answer my own question, you have probably pioneered a new genre, a specialty niche: the Medical Progress blog. Obviously such a record is valuable for the patient (so much is here I would never know about otherwise) but also so helpful--and easy--for friends and family who want to follow along.

Leave it to you to devise something so efficiently therapeutic…it’s amazing how you get so much done, yet remain spiritually grounded. Most “efficiency mavens” turn into automatons. I remember one from the hospital; she was one of the respiratory techs and one of the very few in BICU who was less than wonderful. At least as I recall…Maybe the rest of you guys, after being there hours and hours, ran into some stinkers--but I don’t remember them. Anyway, this lady was always lobbying for me to be restrained. I picked up on it the morning after one of my lucid nightmares, that one in which I “misplaced” about a thousand years of time. Later, one of my nurses explained this tech’s behavior and her penchant for restraining patients who rearrange their IVs or breathing tubs--no matter the reason…

Apparently she takes such behavior personally. That is, her displeasure wasn’t directed at me, personally. Instead, I believe, she resents any patient-related intrusion into *her* schedule. In other words, the point is that SHE makes her QUOTA of x-amount of procedures, rather than that x-amount of patients improve by y-amount of progress.

One time, in an elevator on campus, I heard a professor say, “Man, this would be a great life if it weren’t for all these damn students.”

Not you, though. No, dear heart…somehow you remain focused, whether working odd hours so you can keep up with hospital issues; or planning a theater event to honor a colleague; or juggling personal needs with rehearsal schedules…You’ve really managed to balance high-octane personal power with a strong-hearted, self-directed sense of ethics.

And I could not be more proud.

Thank you for this gift and all your hard work on my behalf.

Love,

Dad

The cat came back...

Just a little photographic evidence that we're not imagining things. Dad's truly up and at 'em. Despite the fact that he calls himself "Two-Tone Man," you can see that he looks damn good. His left hand around my shoulder is the "meltiest" part of him. And look how great it looks! You can't see his arm, shoulders, or back, but believe me, even though they show you the breadth of his burns, to see them now, you cannot guess at their inital depth. Skin is an amazing organ. Have I mentioned lately how amazed I am at the human body? Well, I am.

This was taken last night, when Asia and Dad came by Mom's (Liz's) to pick me up so we could go out to dinner. (Forrest is taking a little Labor Day weekend trip down to the Valley.) We talked about a bunch of little stuff. Chit-chatted. We didn't talk much about any of the "fire business." There was a little, but not much. I think we'll be dealing with the fallout for months to come, but it's nice to see that already, we're able to have conversations about things beyond it.

I flew in from Denver on Friday, and today, I leave for Paris with Mom for the week. There was a time when I couldn't imagine this trip (planned since March) actually happening. But here I go! With Dad looking as good as you can see here, I am so excited to head across the pond and get some more perspective on this great big world we live in. I'll tell you what, though. I will be ready to stay in Denver for a little while after this. And Lee's looking forward to having his wife stay put for a while, too. He's been so, so wonderful through all of this.

Funny that Dad's accident is sort of book-ended by travel abroad -- first Forrest's trip to Italy, and now mine to France and soon, Dixie and Byron will take a trip of their own to Nova Scotia. You'd think we were some kind of jet-setting family, which may be true for some of us, but at thirty-two, this is my very first time off the continent.

Let's see what we can see....

Happy to be alive and getting better little by little

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.”

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.

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.

"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

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!

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.

Texas Nectar

Tea!


Ice Chips!


Grapes!


'Nuff said.

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.

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.

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.

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...

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.

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

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.

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.

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

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.

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

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?

Communication

Today was a day of firsts. The first day off the ventilator. Writing clear words. Sitting in a chair.

Watching you write clearly one word at a time until you got an entire question on paper was pure joy. Real communication. What a great accomplishment you've made. You had several questions for me to answer today. One thing you wrote was: Not getting water is driving me nutz. The answer is you can't take a chance on getting fluid into your lungs. This morning Asia and I had talked about how it would drive us crazy for sure. Jason brought some swabs and a little water so that you could moisten your mouth. You had another terrific nurse. (He also brushed your teeth and then let you brush them. That must be another first.)

The BIG deal today is that you're off the ventilator. WOW. The machine is right there handy. Macon has been giving you a twenty minute breathing treatment with it every 4 hours. Between times, you seem to be doing well on your own.

Another first as well: you sat in a chair today. You thought it was an hour and a half. Jason said it was difficult and he did let you stay a while. Another big deal.

Your arms and legs were free of constraints. Hooray. You had a clear understanding of the trach, the food tube, and your leg wrappings.

You're still getting a very strong antibiotic for the pneumonia. In fact you're getting two antibiotics so hopefully that P word will be behind us sooner rather than later. You're coughing up lots of gunk so that's a good sign. In fact you could pull yourself up into a sitting position in bed which seemed to help.

Oh, and it seems I have a sister for the first time in my life. Apparently Jason got to meet another sister of yours earlier in the day.

You've had lots of company, lots of firsts, and lots of physical therapy today. When I told you before I left, "I love you", I got a clear "I love you", back. You must be exhausted! There is a new goal: getting your days and nights in synch. I hope you sleep well.

Status: No ventilator Oxygen level: 98% Temperature: normal

"How long til I can speak?"

That's what you WROTE ON PAPER to Asia after our little cell phone chat. You also asked her about her job, about getting some water (I can't wait until you can have water!), and, apparently, once Robin and Asia answered your questions about why you're there, you indicated your intent to file a police report! Haha! I do not know exactly why, but this made Asia and me laugh really hard.

You had all kinds of communication going on. Including acting out what it was like to come in and out of consciousness. Asia said you'd make your eyes really wide, then drop your head to the side and let your tongue loll out. Then you'd look back out, eyes wide, and again, drop your head and stick your tongue out. So funny!

Asia was ecstatic after the visit. I think this is the dawn of a whole new era. It may, from this day forward, begin to feel weird for us to write to you as if you don't know the blow-by-blow yourself.

I wonder how long you got, in total, off the vent today? I wonder how long 'til you have a room that friends can visit you in? I wonder how long 'til you can read all the emails I have from your friends? I wonder how long 'til we can go dancin'?

Doing Your Bewildered Best

I've been ruminating all morning about our visit yesterday. During the first week, I began fretting over what it would be like to "wake up" and have a chunk of your life missing. After visiting with a brother who had a bit of clarity yesterday, I was so happy. Then Asia called last night to say you actually had remembered my being there. WooHoo.

See you later today my brother.

Space walk

Daddy.

Asia and I devised a plan to let me talk to you: This morning, she took her cell phone in and called me and put me on speaker phone. (Someone at Parkland's going to read this and slap us on the hand, I just know it.) I told you I loved you and I missed you and I heard you were making GREAT progress. I asked her to squeeze your hand for me. And she said you squeezed it back really good, and that you had a big smile on your face. I said love you both, told you Robin was on her way, and we ended at that.

Well I have a big smile on my face, even though I'm misty-eyed from missing you, because I said GREAT progress: You were off the vent!! You're at the point where they let you take a short space walk. Off the vent. Off the grid.

These space walks will get longer and longer until you leave that vent behind for good, Daddio.

For good.

Nonmusical Beds

Routes and procedures have become more than familiar; they are now routine. So I popped that silver button today, whish went the doors. My blue covered self went boppin’ around the reception desk when I noticed that the sliding glass doors to your room were completely closed. X-ray? With the next step it dawned on me that the room was completely EMPTY.

“Uuuuuh, my brother disappeared.” Sweet Bonnie trotted around the nurses’ station to say, “He went on another tour of the hospital today.” So second time around for new digs.
The good thing is we got in a nice long visit. Your nurse, Jeremy, said they are trying to wean you off the sedative and pain medicine. You had lots of questions today, so I untethered your hands and reminded you not to pull out any tubes. You nodded an agreement. I explained to you that you had pulled out your IV yesterday. You shook your head in amazement.

You were puzzled by the hospital gown. We talked about that. I was happy you didn’t seem to expect me to hand you your jeans and tee shirt. We talked about everything being a mystery to you at the moment and your working on putting the pieces together. When I tried your theme song, you wanted to correct my version so I decided I’d better stop.

A team of therapists came in today. The doctor had you make a fist with your right and which you emphatically did. The left fist was much looser. The doctor asked about your index finger and I explained that was an old injury. “So we won’t try to do much with that, right, Mr. Hinshaw?” He reassured us that you should regain full use of your hands. Then he gave Forrest, Asia and me a new job. Now that we aren’t concerned about fluid retention we can have you working on making a fist, folding your thumb into your palm, and folding your fingers into your palm. Yea, a new goal. He said they would work with you again on sitting up in bed and that the next step would be to help you stand a little at a time even having the ventilator. WOW. We’re making progress, Mikey.

After they left, I told you about Jessie and her pal coming in to help you sit up yesterday. I said she told me about you winking at her last week. So you practiced winking a couple times with your left eye, then with your right eye with your flirty face. It was a hoot.

Good grief, another long blog. And to think, a month ago Colleen and GerRee had to teach me what to do about blogging.

Status: Oxygen assist 40% PEEP 5 No temperature at the moment

Yea, Boo

Today is a Yea, Boo Story like the ones Bunky has told kids over the years. I’ll start with the Boo just because I need to end this episode of our now month long saga with the YEA. I need it for me. Since none of us have had a chance to chat with one of the doctors for almost a week, I was especially eager to do that today. Because you have seemed a bit more active each time your kids or I have visited with you over the past few days, I was hoping to hear that you were ready for the next step toward less and less ventilator help. I must admit that my hearing on Sunday that they had begun a new antibiotic with a lack of explanation or X-ray report gave me the desire for a Q & A with a doctor. After my visit this morning, Dr. Esteroff and two other doctors stopped by the waiting room on their way to check on you. He told me that you have a second strain of pneumonia. This time it is a drug resistant kind but today they started you on a new anti-biotic specific to those bacteria. When I sagged, he quickly said, “We are trying to get on top of this quickly so he doesn’t develop an even worse one.” He also explained that you had pulled out your “food toob” (aka feeding tube-nixed by GerRee) and they were on their way to check on the new one. They wanted to be sure it was going where it needs to be; an assessment they can make from the X-ray taken during my visit. Also, he reassured me that not only is it not uncommon for patients at this stage of recovery to pull out various tubes and IVs, it is almost the norm.
Earlier, your nurse, Robbie, had talked with me about the new toob being smaller, and he was hoping it wouldn’t irritate the back of your throat as the larger one seemed to be doing.
Robbie, what a sweetheart! He was a wealth of compassionate information. When I mentioned the IVs you had pulled out this morning, he explained that you had done fine without the wrist retrains this morning until about 10 o’clock. Then he laughed and said, “I’ve been here a number of years and this is one I haven’t seen before. It is not unusual at all for patients at the stage to pull out IVs, but he pulled this tube apart in a place I’ve never seen before.” Well, I had to laugh; surprise, surprise. He went on to say that patients who have been in ICU for more than a week have their entire bio-rhythms askew. He said they can look out the window at the noon day sunshine and think it is midnight. Every hour someone is in to suction lungs, change bags, check temperature, push buttons on machines, check tubing, turn the patient and taking all the other myriad actions to help someone heal all day and all night. It is totally disorienting.
“So you’re saying that it’s worse than jet lag?”
“Absolutely. He works with us; we’ll take care of him.”
I repeat, what a sweetheart.

Now for the YEA. I could see two ladies through the glass as I approached your room. I slipped in and eased over to the boxes of gloves.
They looked up and greeted me. We introduced ourselves. They were physical therapists. One continued working with your leg. Then Jessie said that they would come back later to help you sit up for the first time so that you could visit with your sister. “Oh, no. If that’s what you were planning to do now, please continue. How exciting! I’m so happy I’m here for this!”
So they did.
I watched with appreciation of your brave efforts and their expertise. When I told you I would be your cheerleader you grinned at me. They directed you to use your stomach muscles to help you sit up, then move first your left leg, then your hips, then your right leg. Inch by inch with their explicit directions you maneuvered your way. I got to help move tubes out of your way and then hold your hand to help you balance yourself as you edged ever closer to the edge. I told you how wonderful it was to feel you hold my hand. Finally you were there. When I realized that you were in position to look out the window, I called your attention to the trees that you could see for the first time in a month. You smiled and looked out. It was an effort to keep your balance, but Jessie counted down the 5 minutes all too soon for me, but you were relieved to get to lie down again. I marveled at your accomplishment. What a thrill for me.
After an X-ray, I got to visit with you. I gave you your daily reminder that GerRee loves you. What a smile you gave! Then, “You and me and me and you, happy together.” Smile-nodding head. Then I reminded you that the book I was about to read from was the one you read to Asia after her knee surgery. Smile again.
You leaned in for a kiss on the forehead when I let you know it was time for your bath. “See you tomorrow, brother.”
Awesome!

Status - Encouraging considering:
Oxygen assist still at 40% PEEP holding steady at 5

Return of the P-word

Oh, the things we get used to, but hate all the same.

Traffic. Bills. Taxes.

Pneumonia.

Yep. Here we go again, Daddio. But this time, that bacteria's not kicking a man when he's down. You've been rising from the mat for some time now. And though it still doesn't feel fair that you should have this weight added back to your shoulders, you know what? Screw it. That bacteria's just been floating around in that hospital, getting used to antibiotics, building tolerances to it's powers. It thinks it's so hot.

But it hasn't met you yet. And it hasn't met us.

Your PEEP is still holding at 5. Your O2 assistance is at 40% still. You're not losing ground and that is key. And Dixie's probably blogging right now about the signs of fight and light in your spirit that you've been showing these last couple of days.

I just had to post this because, as I've been sitting here with the news, stuck in my cubicle, in my office park, in a city hundreds of miles away from you, I just feel the need to re-assert: You are getting better. Every day, dammit. I wish I could squeeze your hand and kiss your face and sing you a song and read your book to you. But I know that Asia and Dixie and Forrest are doing those things. I want you to go ahead and feel your power and vitality. And even though you are tethered to save you from drugged-up dummy decisions like yanking on IV lines, Dad, feel free to get better and get the heck outta there.

I love you.

Day 30: Making plans...

Today is Day 30. Today you are officially a Dallas resident. No wonder you're trying so hard to get out of that bed!

Yesterday on the drive back to Denver, I looked out over the expanse of Texas. Its little towns with their mixture of crumbling and hanging-on and just-built buildings. The live oaks and the cottonwoods growing where they can and please, and the poplars and junipers growing in obedient lines around homesteads. The ever-present signs of oil activity and the new signs of natural gas pursuits....

From Fort Worth to Texline, I thought of you. And our road trips in Texas together. Some as a family, some with an extended family and some music equipment, some just you and me. The Big Thicket, the Davis Mountains and the Red River. Austin, Fort Davis, Mineral Wells, San Antonio, Latch, and Corpus Christi. To festivals, get-togethers, vacataions, hunts, and holiday visits. Time in any of your truck cabs was magic time. Minivans and cars were okay, too, I guess. Together was together, but all of us sitting next to one another in the truck cabs... didn't really get much better.

We crossed into Clayton, New Mexico, and I still had memories to visit with you, whether they came from our '84 adventures through West Texas, New Mexico and Colorado (when Asia was just a growing bean inside a belly), or our more recent drive last Thanksgiving.

And I couldn't help but start making plans. Places to see, drives to take. Can't wait to bounce them around with you.

Sending you thoughts of strength and endurance as you go headfirst into this next phase, getting pinched between the awareness of your situation and the annoyances of it. I cannot imagine how difficult you'll find this, but I know you can do it. You'll have Dixie and Asia and Forrest and Jeff, your friends and your wonderful nurses and doctors to help you through. And though I wish I could be there, too, I know you're in good hands. I'll be back at the end of the month and until then, I will focus on an image of you sitting in Dixie's living room and NOT of you laying in that bed.

Ain't It Funny How Time Slips Away?

Day 28. Twenty eight days in ICU?!? To think I was expressing readiness for a little of your zaniness two weeks ago. I've reminded myself over and over during this journey that it was going to be a long haul. However, on the way to the hospital on Thursday, Forrest and I couldn’t help expressing a tiny bit of impatience with the length of time we’ve spent in one sided talk. While we were there, we made an attempt at your theme song. Unfortunately, I’ve become that woman in the pew behind us in church that we used to grimace about when she sang. (You know, there was always one or more at First Church downtown when we were kids and then in the Christian church with Colleen and Jeff whose voice cracked with age.) Forrest did a great job though, and was kind when I threw him off.

I was so happy to hear that your kids got to see you make your first real joke the next evening even if it was pantomime. I got a great lift when GerRee called last night to tell me about the wonderful visit they had before their return to Colorado. She’s been Wonder Woman, Michael.

I hold on to these moments because it looks as though we’ll hit a few rough waves as you continue your slow ride into lucidness. Today when I approached your room, the nurse was completing the task of getting you settled back into place from close to the foot of the bed where you had maneuvered yourself. She said you have had enough of the place and really would like to be out of that bed. I got the stool so that I could look into your eyes. I went through the litany of reasons you are there and the reason for all the tubes. You really wanted me to do something. I checked everything and massaged every place I could find. Finally, I talked with you about the reason you need the pressure cuffs around your calves. When I reminded you that I had had to wear them to prevent blood clots when I had surgery recently, and told you that is the reason you have to have them, you nodded. I came to the realization that the cuffs are irritating you more than usual because today’s nurse is trying to help you work on the goal of reducing the sedation. She said you don’t like them and you’ve been trying to get them off. I got back on the stool to let you know I understand how frustrating all those tubes and restraints are, but that you’re going to have to get calm and get your mind in a zone to help you ride through this rough patch. I reminded you of your reading Carlos Castaneda and you nodded your head and relaxed. I tried to sing a bit but didn’t have any of our singing kids with me so that wasn’t helpful. (I do OK on our family songs, but then you want to join in.) I was glad GerRee had marked the book they’ve been reading because I read and read to you as I stroked your hair. The nurse was kind enough to let me continue long time past visiting time. We’re into the next phase, my brother, and I have to recognize that as progress.

Status: Good news} Oxygen assist 40% --WOW!! PEEP still holding steady at 5. You’re getting antibiotics for the lungs which are improving because the gunk is getting looser.

Reach out and touch face

You're coming back to Earth alot more these days. Today, you wanted to touch your face. I helped boost your elbow up so you could reach. My first thought was that you wondered how the burns have turned out. You felt your forehead, then your fingers traveled down to your right eye. I held your elbow so you could spend some time exploring your eyelashes and eyebrows. I said, "See? All better. Everything's just fine." Then you just touched your hand up to your forehead, pausing for a little while. I braced your elbow so you could just close your eyes and rest that way. After watching you do that, I decided that, sure, you were one part curious about the permanent damage (NONE!), but you were also one part just glad to be able to connect with some physical part of yourself.

Then you wanted to touch your trach. I said, "Okay, but don't you grab onto anything, Dad." I helped you lower your arm to touch it. I explained where exactly it went into your throat by pointing to my own. And told you that's why you can't really talk right now, showing you how your voicebox is above, so the air can't pass over your vocal cords right now. I helped you feel the two parts of the tubing with your fingertips.

Then you wanted to touch your "food toob." That's what I call it. I hate the sound of "feeding tube." It goes into your right nostril and down your esophogus. Yummy! And it's held in place by a little strap that goes around your head. You felt the strap and you touched the tube. I repeated my warning that you better not grab anything, "or there'll be some real drama around here." You bugged your eyes and rolled them, as if to say, "Oh, yeah. THEN the drama will start."

I laughed. You grinned.

We also attempted some written communication. You tried and I tried to make a go of it, but writing's probably a little down the ways, when maybe you've got a few less miligrams of hospital-grade smack in you. Still, it was a nice to try wasn't it? And you didn't get frustrated. I thanked you for being patient with me and you smiled.

Lee mentioned after seeing you yesterday that, in this state, you are sort of your essential self. He's right. You are kind and patient and funny. And, even on the days when you've gotten understandably agitated, you'll try to calm down when I've told you you're really worrying me. The nurses all say you're very cooperative. And, the thing is, I imagine many people, when they're in this state can be real sweethearts. They don't call it sedation for nothin'. But I am struck by how very you you actually are right now. You're not nearly as animated as you are under normal circumstances. You're just the sweet, unassuming, good person that we all love. Even when everything hurts and you're tired of being on your back and misunderstood and attached to machines and IVs and told what to do.

And you're brave. So brave.

You've been an inspiration to me these last four weeks, Daddy. What you and your dedicated doctors, nurses, and therapists have accomplished with your ongoing recovery is just stunning. And, even though I totally fell apart after leaving you this evening, and even though Mary the 29-year veteran of the BICU saw that I needed a hug and a pep talk, I really am so thankful. Thankful that tonight, I didn't leave my father hanging on for dear life in a hospital. I left him smiling, eyes closed, bopping his head and singing with me as I slowly backed out of the room.

I look forward to hearing the good reports from Dixie, Asia and Forrest. And just because I won't be there to report hard facts from the trenches anymore, doesn't mean I won't write to you.

Status: Holding at all levels: 5 mg/hr of Versed; PEEP 5; 50% O2. They continue to try different breathing intervals for you, giving your lungs every opportunity to do things for themselves. Love you.

How long?

How long is it?
This strange road you walk.
I wish I could walk it with you.
That I could scout out ahead of you
And return with news of the terrain to come.

That I could hand you a canteen full of
Cool water
Which would wash the thick spittle
Of dayindayout from your tongue,
Rinse the frustration from the corners of your mouth
And make everything go down just a bit
Easier.

I wish I could answer the incessant beeping
With the sound of freedom:
The rip of velcro as I remove
Strappy, bindy, cuffy things
From all around you.
From your wrists
Your ankles
Calf.

I wish I could skip alongside you
And listen to you sing a song
Just a touch off-key.
That I could hear the sound of your footfall
On the road,
Taking a pace you choose,
Scraping a rhythm in the dust and gravel
That is all your own.

I wish I could breathe in a little of the dust
Conjured by your journey.
That I could close my teeth on some of the grit
And feel close to you in this way.

But I scan the horizon for you.
Impatiently, faithfully.
Knowing you will crest the final hill
Soon.

Back in BICU

You're back to the hive. Back in the burn unit.

Lee saw you today (Friday) for the first time since he left and he is amazed at your progress.

Forrest, Lee and I were allowed in to see you, even though it was not the regular BICU visiting hours (Thanks, nurses!). We got caught off-guard, because we'd expected to find you in the surgical ICU, which has no regular hours. I love the BICU staff so much, but I have to say, this move back is a bit disappointing to us because you're back under restricted visitation hours. This news really made Asia sad. We're also back behind the masks. For the record, donning scrubs and masks is a thing we're so happy to do for the others who are in great, great danger of infection, just the way you were four weeks ago. I just wonder what you must think to see us looking all sterile again. Hoping you don't think something new is wrong.

Your move is nothing to do with your condition, in fact. As far as I know, you're continuing to improve, although your nurse wasn't very forthcoming with me on the phone this evening. (I know -- rules. I bet she gets a gold star.) It's just that your bed opened back up and you're officially their patient still.

But it makes me crazy. Freakin' thirty minutes. They can kiss my ass. (To any BICU staff who may read this: I know it's not your fault. I'm just frustrated because I leave to go home to Denver on Sunday and thirty minute windows was not how I pictured my last Saturday with Dad.)

But enough of my discontent.

YOU SANG ALONG TODAY!

Silently, of course. But you bobbed your head and mouthed the words. Forrest, Lee and I were delighted. You also made a joke about the incessant beeping. It was a funny face. I took you on a tour of your injuries. You seemed concerned about your lower body and I explained there's nothing wrong there. Showed you your healing hand, pointed to your shoulder and forearm burns. You looked along and nodded, nodded. And then told you the only thing keeping you in the hospital at this point is your lungs, because you inhaled a lot of smoke. You made a face like, "Uh. Tell me something I don't know!" We all laughed. I told you that you're getting better every day and said that the trach is a temporary thing. I asked if you knew that I wouldn't bullshit you and you nodded your head.

You seemed very interested in something off to your left, but we couldn't figure out what it might be. You also tried to tell us something. Make no mistake, you're not sitting there, looking all lucid, ready to talk if not for the trach. Even if we could read lips, most things you "say" could probably not be deciphered. You're likely mumbling dog face to the banana patch, to quote Lee's favorite Steve Martin line. We couldn't understand. But I was so proud of you when you did not let it agitate you that we couldn't. You're still doped up, but they've now taken you down to only 5mg/hr. That's 4mg less than yesterday. And I can only take this to mean you're doing good with staying calm. (Way to go team!)

I love you Daddio.

Kiss and tell

Earlier this week, we'd begun to enjoy a particular luxury afforded to us due to the complete recovery of your facial burns.

Kisses.

We'd never have kissed you on the forehead while your face was still healing. Fear of giving you an infection was too great. But now that your face looks like nothing more happened to you than a spa treatment, we kiss your forehead all the time. And a couple of days ago, you started raising your face to me after I'd kiss your forehead, and I realized you wanted a kiss, as Craig Barlow would say, "Right on the lips."

We are a kissing family. How nice to have this avenue of affection reopened to us. I see the look in your eyes after a kiss from one of us and you look so -- happy isn't the word, and neither is fulfilled -- peaceful? No, not quite. What's a word that describes the feeling that something which is rightfully yours and was stolen, has been restored? It is just one more thing added to your list of Can Do's: Smile, check. Kiss, check. Those two things are big parts of who you are, Daddy.

Status: O2 assistance down to 45% (they actually worked you as low as 40% today!), PEEP holding at 5. Sedative level: 2mg/hr LESS than yesterday. And you were doing great about staying calm and restoring calm after a round of coughs riled you up. You amaze me, father of mine. You and those around you who continue to hold you safe in their prayers.

Day 25: PEEP 5!

Yesterday was day 25.

And you excited us with a whole new step forward: Your PEEP is now lower than ever at 5! This has been the milestone they wanted you to get to!

If you can just hold here for a little while, and if your blood gasses show that you're taking in enough O2, exhaling enough C02, then they'll begin letting you try unassissted breathing at increasing intervals.

Also key to this process, Dad -- your being able to be calm as they take your sedative down. They've had to up your daily dose of sedative by 1mg in order to get you calmer these last few days. Your agitation leads to high blood pressure and that is counteractive to the recovery you need your lungs to make.

So everyone reading this: Let's redirect our prayers, energies, focus and thoughts. Dad's vitality is coming back. And I believe the active prayer has been a huge factor in his healing. Let us now focus on removing the uncomfortable buzz from around Dad. Calm the bursts of confusion. Ask for comfort. Tell him his desire to jump out of the bed is best served by lying still.

And breathing. Breathing. Breathing....

The Three Normalteers

Yesterday evening, all three of your kids were there, Dad. It was nice. Technically, only two are allowed in the room at a time, but thanfully, both nurses didn't bat an eye. (Thanks!) We chatted and laughed alot. We even made your experience of us completely authentic by arguing about teeny tiny matters. Basically, Dad, we showered you with utter normalcy in a bizarro world. I hope you enjoyed it as much as we did.

We couldn't tell. You were high as a kite.

You got doped up pretty good yesterday for dressing changes and such. You're fighting it more and more. Understandable. Just transfer a little of that external fight internally, to your lungs. Let's get you off that vent and out into the world.

Yesterday morning was a nice visit. I read to you. A little of the book I'm reading: The Drawing of the Three, from The Dark Tower series. I never thought I'd groove to Stephen King, but I'm digging this series. The book opens with The Gunslinger waking from a dreamlike state, slowly feeling his limbs awaken, then plunging right into battle with a strange creature. As I read it, I couldn't help but draw the parallel to how you must feel multiple times a day, every day.

Also, as of yesterday morning, I think I've figured out your leg discomfort, once and for all. You like to have pillows under your knees. It relieves the pressure on your lumbar and on your old knee injury. I've told the nurses, and I've told Asia and Forrest. And now I'm telling 396 people.

I think I'll pick up a copy of All the Pretty Horses and leave it in the room with a bookmarker so whoever comes in can pick up where the other left off.

I have to go back to Denver on Sunday.

I have recruited Lee to drive back down from Colorado to come get me. He didn't hesitate. What a champ. The second roundtrip roadtrip down to Texas in a month. I have been planning to fly back when it felt right, but now I truly believe I cannot step into an airport, then onto a plane, leaving you in that bed, on my own willpower alone.

Update: Temperature climbed a bit to 38 C. PEEP still at 10, O2 assistance still at the low, low rate of 50%, which is good. Keep up the good work, Dad.

My foot, #*@*&!.

You've begun to really try to talk. But between the trach and the sedative, it's very hard for you. I so wish I could read lips, Daddio. The only thing harder than watching your face as you're trying to make yourself understood is watching your face turn to defeat when we don't get it. It won't always be like this. But right now, it really sucks. You can't tell us, simply, "I love you." Or, "My lower back hurts, help me shift positions."

But sometimes we understand you. Earlier this morning, I managed to understand the words, "Help me. My foot." Aha! Which one? You shook your left foot. Even the nurse saw that. Aha! Great! Um, what do you want me to do, though? I rubbed it, scratched it, and then finally decided to follow your example. When you move your feet around, you lift your leg high off the bed, so I held it at that height a while. I thought maybe you wanted some relief on your lower back. It wouldn't surprise me, lying there for 23 days straight. I couldn't tell if this was what you really wanted of if you were just ready to give up on trying so you wouldn't have to watch me hold your limbs in the air for no apparent reason anymore.

Tonight, Asia and I saw you say the same thing, and so I lifted your foot up, then propped it up, then we put a pillow under your knee. That seemed to comfort you quite a bit, as you didn't mention it again, really.

We think we saw you mouth a few other things today: "Brother," which we took to mean "Where's your brother?" I explained that he'd been there to see you, but wasn't there now. Then we think you said "pick up" and "airport." We recalled that it had been you who was to have picked Forrest up upon his return from Italy. And we assured you that he was fine, he's back, and he's got stories for you. Then you seemed to be worried about the house. This was something we really didn't want you worrying about, and you were starting to get pretty upset, so we headed out.

But somewhere in there, when the nurse was cleaning out the IV line in your foot (or doing something that stings or bugs you) he told you to relax your foot, and you, being agitated as you were starting to get, didn't want any part of it right then. And when he squeezed his syringe, you made a face and Asia and I will swear that you were aggravated enough by the sting to say, "motherf*cker." Asia and I had been in the process of speaking out loud to each other whatever word we thought your lips were forming, so we both said it. We gasped when we realized what we'd said and looked at each other and then laughed. The nurse laughed, too. And you smiled.

We all needed that.

Update: Your PEEP is back to 10, but your O2 assistance is still on the lower setting of 50%. You get breathing therapies every four hours and you are coughing that stuff out of there regularly. You're making progress, Dad. Little by little. Bit by bit.

Bath Time

It didn't take me long to negotiate the new maze to your new room; GerRee gave me good directions last night. However, when I walked through the double doors of the new ICU, everything was a mystery. I walked in circles for a minute looking for your room. When I found it, I saw that the curtain was pulled around your bed. I peeked around the curtain. There was a new nurse, Stacie, to introduce myself to.
"Mike Hinshaw?" Confirmation.
"Give me about 10 minutes." No problem, of course.

As I stood against the wall, I realized that a male nurse was working with her to accomplish some task for you. Then I saw her rinse and ring out a wash rag. Ahh, bath time. "I'm going to wash you eyes now," she informed you. As they talked with you and with each other, I would hear them laugh. That made me feel good because I figured it reassured you. This family likes to laugh. Then I heard Stacie say, "Stop, Michael." Uh, oh. I knew what that meant. You were most likely trying to get out of bed. I was glad to hear her call you by your first name.

She pulled the curtain open and said I could come in. As I climbed up on the stool, your eyes were scanning the ceiling. Stacie told me that you weren't very happy with her right then. I asked about the Xrays. You're holding steady on all the things we've learned to check, and your temperature has been normal for another 24 hours.

"Hi, Michael, you can see who I am today. I don't have to wear a mask or hair cover." You were trying to get out of bed, lifting as much of your shoulders off the bed as possible, your arms were waving, and your legs were elevated. She was correct; you weren't just agitated, you were aggravated. "They just gave you a bath. I'll bet that was very uncomfortable." I told you over and over who I was and why you shouldn't try to get out of bed. You became calmer, but still wouldn't really look at me and didn't recognize me. The nurse and I talked for a minute about your day to day habit of pacing and seldom being still. She left and returned with some Lasix which is the medication that helps your body get rid of the extra fluid your lungs and body are retaining. She told you that she was turning out the light so you could get some rest. I climbed off the stool, held your hand and began to hum. You closed your eyes, but you were a bit fidgety for a while. I moved from one hand to the other holding your hand and humming until eventually you opened your eyes enough to look right at me, gave me a smile of recognition finally and went to sleep.

New digs and a long blog

You are no longer in the Burn ICU. Between the time we saw you this morning and my visit tonight, someone had come in who needed that bed more than you. I pray for that new person and his or her family. I know how it felt three weeks ago to be wondering with desperation what might lie ahead of you.

So, you're now in the Surgical ICU. Your burns still need careful tending to, but you're no longer at the high level of risk of general infection. Your lungs continue to be the thing, and they can see to your breathing therapies just as well in the SICU as in the BICU. Still, it was a little sad for me to walk to the room we've come to associate with your getting better and be told you were no longer there. I was pleasantly informed of your new location. "You won't need these things there!" said the nurse, referring to the gown, mask, and hair cap. Cool! Yet, as I turned to go, I felt a strange tug at my heart. These folks have been with you through all of it, and they've been with us, too. I felt understood there. I'd grown accustomed to the ritual of suiting up. Dressing for battle. On my way out, it was sort of odd to realize, "Oh. I won't be back here." So I just sort of called out, "Bye! Thank you!" Heh. What a loon.

Here are some bonuses about your new room:

1. You can see trees outside of your window because you're only on the 2nd floor now.
2. We don't have to wear masks, caps, or gowns, so you can see your visitors' full faces.
3. It seems quieter, although I can't be sure, since I was there in the evening and it's Sunday.

Tonight, I was telling you about your new location, pointing out that you now had trees in your view. And I think it kind of got you wondering about stuff in general, because a little later, you began trying to take in all of the room. I reminded you that, yes, it was a different room. Then your eyes lighted on your rolling rack of IV drips and pumps. And you sort of pointed at them with your eyes, staring at it very intently, as if to say, "And these? What the heck is all this mess?" I pointed out each bag or pump and told you what each was for, so you'd know they weren't treating you for anything more frightening that what's actually going on.

We've decided that we should probably remind you each time we visit with you, that the reason you feel like you can't move your legs and arms is simply because your're sedated. Which is funny to say, since how sedated can you be if you're looking right at us when we tell you this? But your body and your thought processes are definitely groggy. And I think you get worried that there's something wrong with your motor functions. I've begun to reflect on how the nurses have said they've asked you to wiggle your toes and you've obliged them. And, the more I think about it, the more I think "Can you wiggle your toes?" would conjure up notions of paralysis for me, if I were groggy and lying in a hospital bed. I think it might do the same for you. Nope. You're burned badly in places and your lungs are still trying to recover from smoke inhalation. That's "all."

You tried to shift your position in the bed this evening. This is a an exercise in patience for both you and whoever's standing with you at the time. We don't like to see you struggle, and we're pretty sure you shouldn't be getting all riled up. But then, if we just step back and look at what you're trying to do, it usually makes sense to us and we try to help. And so tonight, I leaned in to you and said, "Dad. Are you trying to sit up?" And you paused and looked at me and nodded. And I told you that I didn't know if we could get you up more, but that I'd go get some help. And then you sort of shook your head "no." So, I paused for a second. Then you got to moving again, and I said, "Dad. Do you want to be in a more comfortable position?" And you nodded. So I told you to sit tight for a second and I'd get some help with that. And you lay still while I went for the nurse. I explained to him that I thought you'd like to get in a more upright position, as you had sort of slid a bit to the right. He said there's probably not a position for you that's truly comfortable. I replied that I think the most important thing for your comfort right now is that you feel that you can communicate what you need and see that we're trying to listen to you.

He cheerfully obliged. Much to my relief. I don't want to get labeled by the staff as a fussbucket. I know they do this all the time and I've done this a grand total of none, zip, zilcho times. But Dixie and I both feel the same way about this point. We think if anything will freak you out, it will be the inability to communciate. And move, of course, which we've already decided we'll address every visit.

You like getting your songs. Tonight, when I said I guessed it was time for your lullaby, you smiled at me, turned your face up to the ceiling, and closed your eyes as if to say, "Alrighty then. I'm ready." I began to sing "Close your eyes," but then I noticed you were getting a little sad with those lyrics. (More proof that you're more aware these days. They get to me sometimes, too.) So I stopped abruptly and said, "Eh. I'm stopping that one." And your eyes flew open and you seemed a little startled. You looked at me and I said, "That one's a little too melancholy for our mood tonight. I think you need a happier song to end this day." So, you smiled, prepped again, turning your face back up, and closed your eyes. And I sang the song Mom reminded me that you'd sung to me when I was a baby. The one Dixie has come to think of as your theme song:

Imagine me and you, I do
I think about you day and night, it's onlyright
To think about the girl you love and hold her tight
So happy together

If I should call you up, invest a dime
And you say you belong to me and ease my mind
Imagine how the world could be, so very fine
So happy together

I can't see me lovin' nobody but you
For all my life
When you're with me, baby the skies'll be blue
For all my life

Me and you and you and me
No matter how they tossed the dice, it had to be
The only one for me is you, and you for me
So happy together

Singing to you. Asia, Forrest and I do it. Dixie does it. Colleen did when she was here, and Jeff can't wait to be allowed into the room with his guitar. It sure helps me to know there is still this one thing we can give you that, most of the time, zaps right through the fuzz and white noise of the sedatives and anchors you. Although, Dixie is convinced that the other day, when she sang a particular family song to you, you tried to dance to it. So she took it down a notch and hummed a random tune.

Enjoy the new room, Daddio. I'll see you in the morning.

Update: No fever, all else is status quo.

That tube

Without divulging too much information to your adoring public, we'll just say that, although you must have a tube to help your lungs recover, there are certain places you do not like to have tubes. Not one little bit. And yesterday and today, you've let us know about it as best as you could. Well, Daddy, your nurses heard you loud and clear.

So, it is our great pleasure to inform you:
That
tube
is
gone.

End of day update: PEEP 8, O2 assistance 50%; chest x-rays revealed: IMPROVEMENT! And for that accomplishment, they're going to work your settings on the vent all night in an attempt to begin weaning you off of it. (This will be a gradual process. It will not all happen overnight.) We're keeping our fingers crossed for a good report in the morning.

Riding tough

Dad, you're continuing to improve. They took your O2 assistance down to 50%. I think you're getting some breathing therapies. They may move it back up, but they're asking more of your lungs and I believe your lungs are trying to deliver.

As your vitality returns, and as the sedative begins to have less effect, you're beginning to experience some of the discomfort inherent in having tubes and needles in you. This sucks. For you. For us. There's nothing I'd love more than to yank all that crap out of you, undo the brakes on the bed and wheel you out of there like some sort of jailbreak. But, we'd soon see the error of our ways, wouldn't we? Your lungs would tell you quickly what a hairbrained scheme that was.

It's difficult. Dixie and I have both had experiences in which you've communicated your discomfort. You'll move your legs quite a bit, lifting them off the bed and it makes me nervous because you've got some IV action going in your feet. Fortunately, Dixie was successful in getting some resolution yesterday to one source of your discomfort. (She will have to tell you this story. It's a good one. But probably one reserved for private laughs.) But this morning, when Mom and I were there, you were definitely bothered by something again. And I have no idea if you're reacting to the general set of circumstances or something specific that we can't see. I looked to see if the same thing was wrong as when Dixie had been there, but it was not. I brought your nurse in, too, to take a look. I hope you know we're not content to see you struggle and that we (and your nurses) are trying to make you as comfortable as possible.

But this is temporary. This, too, shall pass. You're a champion survivor. And although it's rough to see you struggle like this, we've been given the blessing of witnessing your return to the living. I will just keep that in mind. You don't have to like the tubes. You don't have to lie there, all zonked out. And when you're aware, you don't have to be stoic about it, like there's a camera rolling somewhere. Like you're the hero who lies still through the pain, blinking in morse code to tell us where the bomb's been planted.

You're the hero, Daddy, but you're a buckaroo. So you just dig in your spurs and ride the bronc and we'll do our best to make sure everything that can be done for your comfort is being done.

I love you.