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.

Day fifteen: Preferred guest status

Tomorrow, you're getting a tracheotomy.

Aw, for crying out loud.

The hospital called Asia all casual-like, about "the surgery" tomorrow, asking her about your history with anaesthesia, do you have any allergies, blah, blah, blah, and she said, "WHAT surgery?"

We seriously didn't know anything about it. When I called back after talking with Asia, your nurse Gill said that, yep, it probably seemed pretty sudden because they kind of make the call and then, boom. An anaesthesiologist is calling you.

So, why a tracheotomy? Basically, Daddio, it's a function of how long your lungs are still going to need help. You're not over your pneumonia yet, so it's sure those lungs need assistance for as long as that takes to clear, plus however much longer they need just to get strong again. Clearly, you still need the ventilator.

Okay. Well, right now, the ventilator tube is attached to a tube that goes in your mouth, past your teeth, over your tongue, and down your throat. It is taped and tied into place, with stuff that digs into sides of your mouth, sometimes causing you to bleed. And every time they need to get down there, or if something slips (as it now has, causing a cuff leak, which is making this noise that I know must be driving you crazy) they have to wiggle and shove and your airways swell, and, ugh. Dad. It's friggin' uncomfortable. And it's one thing to put up with a situation like that for two weeks. But two or four or six more?

Basically, Dad, you can consider the tracheotomy an amenity the hospital provides for "preferred" guests who need the ventilator and have been invited to stay longer than two weeks.

How's that? Perfectly pukey? Me, too. I know that you would hate this. But given the alternative, we are all for it. The tube situation now is one that is like breathing through a straw, I'm told. And the new situation for you will be one in which you can breathe much easier and more comfortably.

So, why wouldn't they just do this from the get-go? If you only needed the ventilator for two weeks and they were able to begin weaning you off in order to extubate, then it would've been a needless surgery.

Tracheotomy.

That word and all the other words that have crept into my vocabulary can all go piss up a rope. I have even, much to my chagrin, begun to shorten them. "They're going to trach him." "He'll be on the vent for a while." Getting the hang of a subculture's lingo means you either want to be a part of it, or have accepted that you are. Like my use of corporate lingo, when I say things like, "moving forward," "add value," or "net net." Eek.

But you continue to improve. With a temperature of 38.3 when we left this evening, I am encouraged.

I thought on the way home about how you decorate the Christmas tree. When I was younger, I remember wanting to get right to the ornaments. They were so beautiful, all those antiques of Mimi's and Boppa's, and I wanted to put them on as soon as possible. Especially the ones that had the little fan inside. "Well, first we have to get the lights on. Or there'll be no heat to rise up into that ornament and turn the fan." Great. Let's get the lights on then! "Well, first, let's wrap this string of lights around the trunk."

Uh. Huh?

But, you'd get to it. And patiently twirl a string of small white lights 'round and 'round in the innermost parts of the tree. All that rustling in there would get the pine smell going in the living room. I'd begin to relax. One of us would be steadily feeding you the string of lights.

And I'd be glad that it was taking so long. Because maybe there was hot chocolate, or there'd be music playing, or we'd all be chatting. The moment was lasting. It was becoming a memory and not just a happening. Soon enough, the trunk was wrapped, and we'd graduate to weaving lights onto the branches like normal people do. Then, maybe garland. But finally, it was time for the ornaments.

And oh, how many places we had to hang all of those ornaments! Because you had lit the interior of the tree, there was a whole other world in there to decorate. Little havens, settings for perfect vignettes created by the criss-crossing of pine needles and branches. It was illuminated from the inside out. No matter where we chose to put an ornament, it was assured to take on the glint of Christmas magic and reflect the warmth of a tree decorated together and carefully. Thoughtfully.

Somewhere, deep inside, you are wrapping lights around the trunk. And I promise, from this day forward, to stop worrying about the ornaments for right now. To hang on, give you time while you heal in deeper places than any of us can see or even know. And no matter what you are decorated with when this is all said and done -- new skin or new scars, working or impaired lungs -- they will all have a place. As you, too, will be illuminated from the inside out.

We will just keep feeding you the light.

Things we know

Recently, we've gotten a couple questions more than once and I figure there might be more of you with the same questions on your minds, so here's a few clarifications, to the best of our understanding:

Brain damage is not currently a concern. The doctors and nurses have no reason to fear that Dad has any brain damage. He was able to talk a little to the paramedics and also to the attending doc when he was admitted to the ER. Since being under the sedative and the paralytic, he's given them no signs of loss of function when they've tested his reflexes.

While the burns on his back, shoulders, arm and hand are intense, our bigger worry is Dad's lungs. He had soot coating his nostrils, mouth and throat when he was admitted. He continues to cough up and they continue to suction out sooty goop from his lungs. That stuff is in there, and as a lifelong smoker, he's got a strike already against him. The staff have made sure they've said this to us more than once. Good news: His blood oxygen (that is, the level of available oxygen that his blood is able to absorb) was at 100% today. I thought that was pretty awesome, especially considering it had been down in the low 90s a couple of days ago.

Of the burns, the burn on his left shoulder seems to be the most troublesome. I haven't seen it myself, as it's always been dressed when we're in the room, but I'm told it's a deep burn. So, if anything's going to require a skin graft, it might be that area, but they're still crossing their fingers for no skin grafts. And so are we.

We won't know what may've started the fire until Dad can tell us what he remembers. We may not ever know. What we do know is that the firemen (thank you so much, gentlemen) found him asleep on the bed in one room, whereas the fire started in the adjacent room. We also know that the fire investigator said that three or four minutes longer, and we'd be dealing with a whole different situation.

Hope this helps. Love to all.