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.

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.

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...

Monday, August 4, 2008

Momentous Day

Voice!

Ginger Ale!

Mike said, “Hi. He loves
everybody. ”


Nikky was with me today. Since you are back in the BICU, we got suited up to come in. When we got in the room, you motioned for us to bring the chair over and for me to sit down in it. Then I heard, “I wanted you to sit down for this.” Of course, I jumped up. “Oh my God, oh my God! You can talk!!!” That’s when I noticed the red cap in your trach. I can’t believe I didn’t notice it right away! You said, “I got some ginger ale too.”
“Was it nectar of the gods?”
“Oh my God. They told me go ahead, take a sip. Then I crunched on the ice. They told me it was OK, but I said, “I’ve got to feel every molecule.”

Then you made and snatching motion, “Then they said, ‘OK, you’ll get more tomorrow,” shook your head and grinned.

You also got to try a little applesauce and a bit of graham cracker. It's a slow go, because they can't take a chance on anything getting into the lungs. You've got to learn to swallow again.

Day Thirty Seven: I heard my brother’s voice. When I told you I'd go home and put it on the blog right away, you said, "Put Mike said Hi. He loves everybody."

The physical therapist said you could manage the technique right after the speech people taught you what to do. She said most people do a little at a time over a few hours. We’ve been telling them you’re a talker.

Hear you tomorrow brother.

Sunday, August 3, 2008

Sunday Number Six

Here we go again. The ICUs are fighting over you, I think. Everybody brags on what a good patient you are so I guess they don’t like it if one ICU has the pleasure of your company for too long. It’s back to the BICU this evening. I was very glad it didn’t happen earlier in the day because we had a nice long visit again today.

Yep. More animals. As soon as I began digging in my bag and telling you that Robin had sent me with your power animal, you nodded. We read it together. Not surprisingly, it was a big hit with you; you requested it be placed on your blog. I was pleased you remembered about the blog. They’ve lightened the sedative and the pain medication drip. After you took a nap from your morning work out in the chair, you were wide awake for quite a while this afternoon.
I told you about stopping by the house a few times and seeing hummingbirds. I still have the same only two hummingbird bushes, but you have trained your volunteers into a lovely privet hedge. Four different times I’ve been sitting on the bench outside when one has helicoptered in for a meal. I realized hummers should be included with hawks as omens for good.

Poppy, the respiratory therapist, came in again today to give you another breathing treatment. When I told her that you had written that it is scary to have that machine take over so much of your breathing, she tested your oxygen level. We joked about maybe it seemed like the Borg to you. She asked if I was a Trekkie. I admitted not exactly, but I had a son in law who certainly qualifies. You worked hard at taking deep breaths and expelling lots of air. You raised the level of the gauge up to 2000. She said that ordinarily a healthy person of your age and height should be able to raise it to 3000, so she was impressed. She determined that you probably don’t need that machine to assist with your breathing treatments any more and made sure you had your new device to take for your return to the BICU. She’s another sweetie. For now, they can give the Albuterol through the trach. You didn’t mind that. You got a shot of Heparin in the tummy (very small needle Kelly assured me) and liquid Zantac into the IV tubing. That’s SOP for all ICU patients.

Randall let me know that you still have lots of secretions so she suspects it may be a little longer before the trach can be adapted for talking and for food. You’re doing an amazing job of being patient. I have to work at it. You did write that today you’re thinking of all kinds of sherbet and ice cream. I told you the story of our trip to Disney World. Chad has long corrected our pronunciation of that icy treat. When someone decided on sorbet for dessert and someone considered sherbet, I suggested it must be “sherbay” so Chad said that was the name for this family from now on. I’m off to make room in the freezer for lots of flavors of ice cream, sorbet, and sherbay. See you tomorrow.

Status: Oxygen 100% Temperature normal

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.

Saturday, August 2, 2008

Plan for the future-Iced Tea and more of it

Because we spent the central portion of this Saturday together today, it would take three pages to describe it. I’ll leave that until another time and put the condensed version this evening. I brought the dry erase board that Byron bought for you. It helps. We talked about both of us being ready for you to come home with me soon. You wrote: iced tea—sweet, unsweet, raspberry, peach, pear, green, mint..... I told you we’ll get all the flavors you can think of and all the ice you want and some flavors you’ve never thought of. I reminded you that Shanna says that you can have swabs of water for your mouth every hour, but not more because we can’t take a chance on fluid getting into your lungs. You’ve got way too much as it is. You sat in the chair more than two hours today. As soon as you were settled in it, you began the exercises that the therapists have given you. You had a breathing treatment while you were sitting there. Wish we had a movie of the contortions the RT was going through to get you all hooked up!

You wrote that it’s scary to have the machine controlling your breathing. So we had a discussion about how long you were on a ventilator with a wad of plastic in your mouth and your mouth getting sore, then discussed the time after the tracheotomy and having a machine control your breathing through the tracheostomy. You just shook your head in amazement. The respiratory therapist assured us that the full time ventilator days are gone. WooHoo!

You took some good naps today.
Since you can’t talk, you reach out to shake hands with anyone who has done something new to take care of you. It’s so reassuring to see my sweet brother being who he is instead of my brother simply lying in bed trying to heal from the inside out. Now your work has begun as a concentrated effort on your part. You’re doing a great job. I love you; see you tomorrow.

Status: Oxygen level: anywhere from 89 to 100% depending on coughing etc. Mostly in upper 90s -- doing very fine
Temperature normal Sedations remain on the drip system at the same level for the past four/five days

Friday, August 1, 2008

Talk Again

Hey, Unc. It's me again. Word on the street is you're startin' to communicate. That's amazing, and I can't wait 'til you're back on your feet again. But I guess that's for another day. It's cool, though. I'm just here to talk to you anyways.

So, summer Band has started up again, and it's a total blast. Today and yesterday was our "Fish Camp", in which the student leaders teach and guide the incoming freshmen in the ways of Marching Band. This year, we've got awesome kids. (Unfortunately, the clarinets kind of have the memory span of a gold fish. But, that's okay! They're still gettin' it!) But so far, they're absolutely amazing. They just have to keep doin' what they're doin', and man, we'll be takin' home the gold!

Uh, also, I mentioned student leader...Yeah, I'm a T.A. (Teacher's Assistant) this year. So I was one of those people teachin' the Fish...And it felt awesome. (For more than one reason, but, honestly? It was great not being in their position. I'm horrible, I know.)

I think this'll be a good year. Hopefully. I wish you well, Uncle, and I send you love.

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?