Sunday, November 22, 2009

New Faces






I love those moments when Aurora will let me ply light off her.
Talk about porcelaineous skin!







Yeah, I seldom have images of myself... but enough about me has changed that it was time to show my face. Nancy gave me a wicked-cool haircut this friday. I love it!

Friday, November 20, 2009

Nights are Tough

Seems like the weight of the day accumulates and crushes my body while I try to fall asleep. With less meat on my bones, my knees and ankles are so knobby that they cut off circulation to my limbs when I lay on my side. My arms and shoulders are so out of whack, that when I lay on my side or on my back they either go numb or feel like they are full of fire ants crawling their way out. Tonight my back decided to get in on the fun. As tired as I am (exhausted), I can't sleep because the pain outweighs the fatigue. All of this despite two vicodin, one skelaxin, and an ativan. I should be sleeping like a baby... but this baby just wants to scream.

I know no one wants to hear the bad shit. I try to remain positive everyday, but nights like this make me feel like I am losing my mind. If I could cut off my left arm, just to stop this incessant nerve pain, I would do it. It is absolutely mind-crushing.

Just took round two of heavy meds, hoping for a pharmacological solution to this pain and frustration. I hate taking any medications. But I also need sleep. I think a dose of valerian earlier in the night might help. I worry about adding more to this already potent mix of meds though.

Thursday, November 19, 2009

Pain and Torture

That's what PT stands for. Not physical therapy. I have done my years of therapy. It involved lots of talking, and too-soft couches. There is none of that where I do my PT. Just machines that push and pull and prod and creak. Then there are the sounds I make! Creak and groan and wail and gnash and sob.

There's no mistaking one therapy for another. This is the real deal. They are slowly but surely rebuilding my busted body and replacing it with one who just might be able to dance!

Today we dealt with the right shoulder's bursitis, the left shoulder's over stressed muscles, my ongoing pain in my feet, calves and shins, and my abdominal pain from the surgery. Yeah, we hit all that fun in nearly 2 hours of PT.

Somehow though, I wish I could go back tomorrow for more. My ankles and feet feel better after a brutal day on balance boards and wobbly squishy balls. My arms move better after being twisted and leveraged out of their painful locked up state. Best of all, coordination is growing by leaps and bounds. Proprioception is the big word of the week. Can't wait for next week!

Tuesday, November 17, 2009

The Middle of the Night

It is nearly 2a.m. and I am awake but wishing I weren't. Coffee ice cream (Starbucks!) will be the death of me. I just cant handle my coffee. Keeps me awake for hours! Top it off with some back pain issues, and an inability to get comfortable in bed... makes it so I just cant force myself to sleep.

Instead, I figured it was a good time to share some of my favorite images from my first non-family portrait shoot. My plan is to do more portraiture over the next year. I have a long way to go, but I am starting to have a vision for what I want. In this case, I needed to come up with high school senior pictures for a beautiful young lady. Very specific requirements. Here are the results:










Sunday, November 15, 2009

Okay, you asked for it




Since I can't make pots for a few more months (need to wait for this deep wound to heal)...here are a few of the pots I made before I went in for surgery. More coming later in the week as we start packing pots to ship orders that were placed back in the summertime. That's right... orders are almost finished. Anyone waiting on anything blue or cranberry have a couple more weeks to wait since we need to mix more glaze and then glaze like mad. Should be at least one firing's worth, maybe two.

Friday, November 13, 2009

History of the White Deer of Seneca Lake

This is verbatim from Seneca White Deer Inc.

http://www.senecawhitedeer.org/history/whitedeer.php

This is a fascinating story, and day after day, folks stop along the fenceline just to see these white deer. They arent tame but they are less afraid of people. Pretty amazing!

WHITE DEER HISTORY

How It Began

White DeerIn 1941, 24 miles of security fencing enclosed the area now known as the Conservation Area (CA) of the former Seneca Army Depot. Captured within the fence line of the CA were several whitetail deer (Odocoileus virginianus) of the normal brown coloration. Within a few years, however, something unique happened. White pigmented deer began populating the brown deer herd within the CA. The U. S. Army, sensing something unique was taking place, gave the white deer protection while they managed the brown deer through hunting. This was necessary to keep the population within the carrying capacity of the habitat of the CA.

How did the white deer coloration manifest itself within the CA?

It appears one or more of the brown whitetails originally confined with the CA, carried the recessive gene for white coloration. Over time and with protection from the military, this normally recessive gene continued to manifest itself. Today, the CA is home to the world’s largest and only herd of white deer, nearly 200 individuals strong. Such a density of white deer can be found no where else in the world!

White deer have brown eyes unlike albino deer that are pink eyed. It is also not uncommon to see brown does with white fawns or white does with brown fawns. The color combinations of white and brown deer range from gray to brown as well as white spotting along with pure white.

How are they protected now?

To protect the entire deer herd, the maintenance of the 24 miles of fence must be maintained. Within the fenced area of the CA, the white and brown deer can be properly managed through hunting to keep the herd healthy. If the fence line degrades, and the deer escape, especially the white deer, they are heavily sought as trophies and will perish quickly.

How you can help protect them in the future?

With your help, this unique natural resource, the white deer of the former Seneca Army Depot, can be preserved for generations to enjoy and marvel. To help in this endeavor, check out on how you can assist

COPYRIGHT © 2002-2009 Seneca White Deer Inc.

Thanks to Seneca White Deer Inc. for posting this great information.

Thursday, November 12, 2009

Field Trip!

After making my first foray into Ithaca for out-patient physical therapy (thank you for the ride Douglass!!), I spent the rest of my morning stretching and noodling about the house. I was just about to wash dishes for a few minutes when I got a call from Jeff (from the Cayuga Creamery).

Would I like to go on a photo excursion to take pictures of the white deer, says he. A field trip thinks I. OH BOY! A chance to get outta the house and not a chore, not a doctor's appointment, not to the hospital! YOU BETCHA!

Three thirty rolled around and we were off to the east side of Seneca Lake, to the old Seneca Army Depot, where they have snow white deer. The light was falling and the air had a nice crisp snap to it.










We were able to get pretty close, oftentimes within 10 feet. Fall light is fleeting and by 5pm, it was too dark to shoot more. Coming home I was so excited and tired. Jazzed to be out doing something fun, and tired from getting in and out of the SUV, sore from trying to walk and stand on the uneven roadside ditch grass. But most of all, I was thrilled to have friends who are willing to go out of their way to come and visit, take me places and keep me from going stir-crazy while I recuperate!





Tuesday, November 10, 2009

March of the Tin Potter

Today marks yet another Indian Summer day; overcast, but warm and enjoyable. I'm still waiting for that fall misty rain that always seems to mark November's arrival. Then again, anything that curtails my walks outdoors would definitely hinder my recovery.

I have found over the past few days that walking out on the road has gotten easier and I can go incrementally further. There is always pain; due mostly to lack of muscle tone and flexibility. It's as though I have the physique of an infant trapped in a 200# body. Really hard on the joints!


Aurora is watching Dune tonight. Things she noticed: the Fremen soldiers using the "weirding module" look much like I did with my trach tube in place. The guild navigators had tubes running from the back of their heads to their nose which apparently much like the O2 monitor that I wore in the ICU. That O2 monitor left a groove in my forehead. Aurora and Nancy said that grants me entry into the Dent Head Club. Now we all have dents!

Small Successes

Yesterday was my first visit to Dr.Wang (our local traditional Chinese herbal medicine and acupuncture practitioner) since May. When I last saw her, I was frustrated at my inability to lose weight... acupuncture can be very helpful in restoring/invigorating metabolism.

When Dr. Wang and I locked eyes yesterday she took a double-take and then looked like she might cry. My heart sank, knowing that she had no idea what I had been through. For the better part of twenty minutes we talked about the ordeal. Nancy had to do most of the talking because I totally lost it. I find it incredibly difficult to talk about what was done to me in order to keep me alive.

I had been worried about going to acupuncture because usually when she works on me, I am on my side and she fills my lower back and shoulders with needles. Yesterday though she kept me laying on my back. Apparently my "life force" was severely depleted by the month and a half long sedation. Yeah... I would have to agree. I have no stamina, no strength, and everything hurts all the time.

During acupuncture though, my body floated. No pain, no sensation. I wish sleep brought such relief. I am sleeping like shit. I might get 3 hours uninterrupted. Then I either am in too much pain to fall asleep or I have to go to the bathroom, or I simply cant get comfortable. Any one position too long just aches.

Sorry to bitch and moan.

The good news is that our friends Carol and Gordon loaned us their battleship of a recliner... this MONSTER Barcalounger. Finally I was able to get comfortable downstairs! This means we can get rid of the loaner from the rental place in town.
And it means I can nap without having to climb stairs to our bedroom.

Nice.

Sunday, November 8, 2009

Midway through

We are half the way through Sunday already. Most of it I spent sleeping in a recliner after waking up at 6am and was unable to get comfortable in bed again. I am really looking forward to the medical recliner than is supposed to arrive here tomorrow some time after noon. I need a lot firmer support than most cushy recliners feature.

It does seem like some of this increase in pain is due to opiate reduction. My Fentanyl patch is a lot smaller this changeover. Another 5 days and then I am off the patches.

The great news is that I get to go to acupuncture tomorrow morning! I am a little nervous because I cant lay on my stomach, and getting onto my side takes a lot of effort... but we'll figure something out. For now, I am just excited to know I can get help to stem the waves of pain my back is going through.

Saturday, November 7, 2009

The first day

Today is my first full day home from the rehab unit. As weak as I am, I am still moving around the house, finding ways of maintaining stability... all in all, doing well. I'm looking forward to getting outside more, walking greater distances, and most of all, I look forward to seeing all my friends and family.

Thursday, November 5, 2009

Shaved, Shaken and Rolled

Since my first surgery back in September, and through all the subsequent surgeries and recovery, I have seen my blood pressure increase into that zone where it needs to be treated with meds. Bear in mind, I never had high blood pressure prior to this time. The attending doctor decided last evening that it was time to do an EKG to see if anything was wrong (damaged) about my heart. Nope. At least that was what the EKG technician had to say. My surgeon thinks that this high BP is due to the stress of being in the hospital and will likely go away as soon as I get used to being home and start to truly rest and recuperate. Let's hope so! As a result of the EKG, I had to be shaved in yet MORE spots on my body. Suffice to say, I have been shaved or had hair ripped out due to tape or bandages everywhere it seems, except my feet.

It is scary and disturbing to think that all the time in the coma has had such an effect on my body. Being horizontal for over 6 weeks wreaks havoc on your organs, which are designed to be vertical most of the time.

On top of my heart trouble fears, I also had a wickedly brutal two days of PT. Today we went outside again. This time walking on uneven ground using trekking poles to steady me. I didnt really think about how exhausted I was, but when I got to my OT session I nearly passed out. To recover, I sat down in the recliner in my room. Two minutes later I zonked out. I had to be rolled to back to my room because I was so unsteady. Scary.

Now, I am ready to sleep and get ready for my departure tomorrow. I cant believe it is finally time for me to leave the hospital! I will have my own bed to sleep in tomorrow night. I still have about 1/10th my original strength, so even simple things like walking to the bathroom exhaust me. But at least now I can move that far.

Wednesday, November 4, 2009

Not So Hot

Feeling pretty beat tonight, so I wont try writing much. I head home friday so expect more fun then.

Monday, November 2, 2009

Helpless

Tonight I figured I would write a little bit about being helpless. As anyone who reads this blog regularly knows, I spent a month of this fall in a coma. In the following three weeks before I entered the rehab unit, I drifted in and out of a drug induced haze. I was unable to move a muscle. Not a finger. On top of that I was unable to speak for the better part of two weeks. During this time I was expected to participate in PT while still in the ICU. In order to do this I was lifted bodily out of bed by means of a hoist device. I would be strapped in, nylon bands cutting across my torso and groin, pinching my catheter, my feeding tube, oxygen tube, and a half dozen more wires and hoses getting caught on all sorts of things. This then would pull at my face, crotch, chest, you name it. It was never simple. Some days I would get whacked in the face (more than once!) with the spreader bar of the hoist. It was never uneventful or relaxing.

Then they would move me to a reclining chair with the premise that being upright would help circulation and help get me over my pneumonia (which it did). For the first week, being upright made me cry. It was all I could do to sit up. I couldn't even hold myself upright. I would start to lean within about 4 minutes. Some days the PT nurse would do range of motion exercises and I couldnt even add any input. By the end of the second week, about the time I could finally talk via this device attached to my trach tube, I was ready to speak my mind.

Instead I found myself so grateful to be able to communicate, to be able to tell Nancy how much I loved her, to be able to talk to Aurora to let her know I was ok and that she was loved... with all of that foremost in my mind, I couldnt really complain.

Which brings me to my thought for the evening: there is a transition from being helpless to being able to begin to help yourself. For me, I knew I was making that transition when I was able to help encourage others on the rehab ward. So what does it mean to help yourself? What does it really mean to be helpless? How does one ask for help? I am lousy at asking for help. Yet as soon as I was unable to physically ask for help, it came out of the woodwork.

I cant begin to thank everyone who has helped Nancy, Aurora and I. Without a doubt, we couldn't have done it without help. I would not have made it back from that coma without all the help we received. Saying thank you sounds so small compared to how I feel. I am so thrilled to be alive... to be back... to know I have more life to live.

Many friends have asked what it was like in the coma. I am going to try to write about it. I will probably try to put it into a small book form rather than the blog. If you have a desire to read it when it's finished, let me know. I can tell you it wont all make sense and the imagery is both personal and surreal.

For now though, I need to catch up on some sleep before another day of PT tomorrow.

Sunday, November 1, 2009

Anxiety and Fear

As I was posting to Facebook tonight I realized that for all of my attempts to write about life here on the PT ward, I have left out some of the more difficult aspects: Anxiety and fear. In my case, the anxiety hits me like a ton of bricks every night, right around 8-9pm. Makes falling asleep very difficult. It seems to center around my fear of falling asleep and not waking up for a month. Having experienced my coma for a month, I dont think this is an unreasonable fear. Things are improving bodily, with each day showing physical improvements and more control while walking and such. The fear of more surgeries and complications though hit me broadside as soon as I try to go to sleep. The upside to all the heavy duty PT is that I cant fight off sleep. I am off to zzzzs about 8pm. But on nights where the exercise has been light, or in the case of weekends, just about non-existant,... I am still wide awake till nearly midnight. Not a great way to get a good night's sleep.

I would love to find solutions to this ongoing sensation. Some part of me is thinking it could be tied to any one of the numerous meds I am taking... anti-clotting meds, zoloft (still havent gotten anything definitive about zoloft), various pain meds like fentenol (sp?), vicodin, blood thinner, blood pressure meds,... all of which have likely side effects. The question is whether that is the root cause. My suspicion is that this anxiety is pharmaceutical rather than psychological stems from the timing. 8-9pm, regardless of lighting, sounds, or visual stimuli make me think it isnt just night falling. Gotta be something more.
Ideas anyone?

Saturday, October 31, 2009

More Steps Towards Freedom

Today being Saturday, we have the day "off" from PT. What it really boils down to is that we get just 1/2 hr of PT and that's it for the day. The PT nurse was someone new who'd never worked with me but was willing to pick up right where my usual PT nurses left off yesterday. The best part was that she had many different techniques and approaches to essentially the same movements.

The best part of PT though was more walking. This time it was different. The PT nurse decided it was time for me to try it without the assistance of the various appliances we've been using. Instead I held her hand lightly (didnt really need it) and walked down to the nurse's station. On the way back I had to stop and hold onto the wall for a minute. It is extremely exhausting walking any distance still, but doing it freehand required so much more concentration, focus and strength that I was just exhausted after my walk. It was a fantastic sense of freedom. This was the farthest I have walked and it was just a hint of what is to come this week as we prepare to send me home. I may end up walking at home with a cane for a while as I regain my strength and stamina. So much muscle to grow back still.

That was Saturday. A day "off" but still a day of learning and pushing this body to relearn how to walk and move. More fun tomorrow!

Friday, October 30, 2009

Food For Body and Soul

Today was another exciting day on the rehab floor. The big deal today was all the walking... yes WALKING... first with a rolling walker, then with two canes. I walked the entire floor. Exhausting but very rewarding. Then we practiced getting me up and down real stairs in the stairwell. I also was allowed to try walking with no assistance while cooking in the PT/OT kitchen. I Was asked to help with today's baking project: pumpkin crunch bars, which ended up like a cross between pumpkin pie and pecan pie. Great taste. The big deal while cooking was the standing unassisted for nearly an hour. Very exciting to be trying more independent each day!

Tomorrow and Sunday are our days off. My body is exhausted and in a fair amount of pain. Getting two days off is a purposeful part of PT. They know we need time to heal and recover. It also gives me a chance to meet guests who come to visit (and time to email!!).

Now it's time to zonk and ice my sore body parts.

Thursday, October 29, 2009

Adventures on a Thursday

Normally Thursdays are just another day of hard work on the rehab floor. Today things were a little different. For one thing, I was in a lot more pain (I asked for my pain meds to be decreased earlier in the week)...but more importantly, I got a new walker today. This one is sized for my height and best of all, HAS WHEELS! So I can totally cruise now. The biggest coup today though was walking with just the assistance of the wall. Yep, I was cruising the hall just holding onto the wall... a week ago I couldnt hold a pen or lift a book. Strength is slowly coming back but it is one heck of a growth curve. I have never experienced this level of pain before. Each day there is two to three hours of PT and OT. Today the OT was showering. Two showers in two days. Talk about perfect! The only downside is that it takes about twenty towels and half an hour to shower. I can finally wash myself unassisted which does a ton towards making me feel MUCH more human.

I am slated to go home in ten days. That means I have a lot of healing to do. I want to go home fully capable of climbing our stairs unassisted, of walking from the car to anywhere in the house... it just means I have to keep pushing myself everyday in PT.

Wednesday, October 28, 2009

Exhaustion

After three rather extreme hours of PT yesterday, I am beyond exhausted. So what's happening this morning? I am off to shower then three hours of PT & OT! Good morning!

Tuesday, October 27, 2009

Tubeless!

They pulled the trach tube today! Woo hoo!! No more choking!

And the PT team thinks he could be totally independent, able to move and live without any kinds of aids, in 2 weeks. That's my boy!

You may have noticed that Alex managed a short post yesterday using the iPod Touch my sister and her hubby gave him, which I think is commendable. I can't type on the damn thing, and there's nothing wrong with my muscles! He may not post again until we get a lap top in his room.

Sorry this isn't much of a post but I am completely exhausted and am about to go to bed. Yes, at 7:20pm. That's how tired I am. -Nancy

Monday, October 26, 2009

Freedom

I am writing my first blog post in a long while. Straight from the rehab unit via Tobi's kind gift! It is very hard for me to type on this itouch but I wanted to say thank you to everyone. When I can get a real keyboard i'll write more. Much love and thanks.

Burnin' Up the Track

Alex beat and 80 year old in a wheelchair race today.

He passed him at the garbage cans.

Now, before you call him a bully, you must understand that his opponent had only had a hip replacement, and had not been at death's door for any part of his hospitalization. Alex was definitely the underdog in the situation.

Just to give you an idea of where he's at: he walked (with a walker) unassisted by human hands from his chair in his room to the parallel bars in the PT gymnasium, 2 doors away from his room. His PT just about flipped.

He also successfully negotiated going up and down some 4" steps on his second attempt. You're not supposed to be able to do any of these things so soon after getting into the PT unit. I'm not sure how much help he's going to need once we get him home....we'll see!

Sunday, October 25, 2009

A Touch of Bursitis

The shoulder xray shows a touch of bursitis in Alex's right shoulder, which apparently can happen when someone's gone without using a joint and suddenly starts using it again. Nothing some ice can't handle, but he's taking it a little easy on the wheelchair acrobatics for now. (i.e. no wheelies)

We took him for a spin up to the ICU so he could meet some of the people who took such good care of him while he was unconscious. I thought Dr. H. was going to burst into tears, he was that happy! Some of the nurses who had him most often were there, and everyone was duly impressed with his progress. Then we went to Short Stay Surgical, but there weren't many nurses around, so we went outside and caught some rays!

I fell asleep on Alex's bed in the middle of the day again. The staff at the rehab have seen me do that more than once; they're seeing me at the tale end of this crazy time so I'm not exactly at my most energetic. One of the nurses asked if I do anything but sleep! ;-)

Either tomorrow or Tuesday they are going to take the trach out and let that hole in his neck heal up. There are whispers that he may be out of rehab and back at home in as little as 2 weeks! Alex continues to get stronger every day, so it wouldn't surprise me.

I'm planning on going in to work 1/2 time tomorrow, and I can't stay awake, so I'm off to bed again. Apologies to anyone I haven't called today...this was all I had energy for...

Saturday, October 24, 2009

A Day of Rest

Yesterday was a big day of activity and improvements; today was a day of recuperation. Alex was very sore from all the "stands" he did yesterday, and had to have extra pain meds to sleep last night and to stay comfortable today. That being said, he still had a shower, some PT, and a trip to get his chest and shoulder xrayed today, for a total of 10 "stands". He was pretty whupped by early evening today.

He saw Carol and Marc, Leah and Aurora, Lydia, Cheryl, Rachel and Garrel, and Mom and I today. Whew! (Did I miss anybody?) Thanks to everyone who came, and for all the goodies and flowers. Alex loves having company. Apologies for his need to cut some visits short today; as I said, it was a long day.

Tomorrow the massage therapist will be working with Alex from 6 until about 7:30, so you may want to plan your visit accordingly. Earlier in the day tends to be an easier time for visits for him, anyway.

Today we received an anonymous donation through "Giving Anonymous." Many thanks to our mystery donor. We appreciate the "band-aid money"! So many people have been so kind and generous. It's somewhat overwhelming, trying to find a way to express our gratitude. Thank you for all the gifts of food, most recently a HUMUNGOUS pot of homemade chicken soup from Darlene and Don. YUM!

I still can't get our @#$%ing laptop to connect to the wireless network in the hospital. I've had a few friends play with it, and we can't seem to reproduce whatever my techie friend managed to do to get it to work at Cornell. So bear with us; when we get it going, you may start to see posts from Alex on this blog!

Friday, October 23, 2009

Breaking All the Records

Alex stood 13 times today, sometimes staying on his feet for a few minutes at a time! Yesterday he was worn out after standing twice. He stands with a walker, and just now to move from his recliner to his bed, he stood, turned his body by taking a few steps, and sat, all with VERY minimal assistance.

It's incredible how quickly the improvements are happening. He's coming along really quickly. He even shaved himself today! I've several times thought that I could go back to work, only to find that Alex needed me more than ever; I think I can truly say that he's going to be too busy and too well attended to need me all day long! I'm planning on going back to work part time next week. I just have to figure out what the schedule needs to look like.

They took his feeding tube out (ouch) and suddenly real food sounds and tastes good again! He's lost the IV hookup that was in the back of his left hand, too. The only tube he has is his trach, which will disappear within the week. Part of his surgical wound is still open and requires daily dressing changes, and then of course there's his colostomy bag; he's starting to look like Alex again!!!

The sense of humor's back, too, which is a good thing because rehab can be rough. Tonight our friends Jeff and Judy from the Cayuga Lake Creamery brought 4 pints of ice cream, which we were very happy to dip into! We shared with the night nursing staff, and they all gave all the flavors a thumbs up! Thanks for the goodies, J&J!

This weekend visiting hours are from 11am to 8:30pm and Alex will be looking for people to chat with! Please feel free to come see him! If you saw him at all during the last month and a half, you'll be surprised to see how far he's come.

Thursday, October 22, 2009

Outta the Ballpark!

If the last few days have been good, today was "Outta the Ballpark" on the scale of good to incredible.

Alex had a SHOWER after a month and a half, with the help of the Occupational Therapists. That was wonderful enough, but later in the day he had an hour and a half massage from a friend who is a PT and MT. It was amazing.

In between, he had PT, fed himself breakfast and lunch, and rested. Then Carol and Marc came to visit during his massage. A great day all around.

This rehab unit is amazing. Everyone here loves their job, everyone is calm and collected, and yet an amazing amount of work gets done. Alex has improved his strength, endurance, and dexterity in measurable amounts, even over the course of one day!

I'm glad that he is in a space to be able to have visitors now, because that will give me some time to take care of some things. For instance, the insurance company is refusing to pay anything for the anesthesia for all of the surgeries. Can you imagine? As if anesthesia weren't "medically necessary"?!?! Sounds like something out of a Monty Python sketch. ("...Can we have your liver, then?")

So, insurance companies notwithstanding, we had a great day and look forward to another one tomorrow.

Thanks to Mary Ellen and Joe, and Carol and Marc for coming to see Alex. It meant a lot to him, and it really helps to pass the time in the evening.

Wednesday, October 21, 2009

Checking Into Rehab

Oh dear, that title sounds like I'm talking about Mel Gibson or Robert Downey Jr....

"Checking into the Physical Rehabilitation Unit." How's that?

Alex is moved into room 245 at the hospital and he is DEFINITELY READY FOR VISITORS. He has worn me out today; he's apprehensive and he didn't want me to leave. I came home to take care of my sick kitty and sleep in my own bed though. Yes, I feel guilty.

But this is where you all come in: PLEASE feel free to visit him between the hours of 4pm and 8:30pm on weekdays, and 11am to 8:30pm on weekends. (There's a midday block of visiting hours on weekdays, but I can't remember what it is at the moment. Will post it tomorrow.) The rest of his time will be taken up with sleeping, occupational therapy, and physical therapy. If you call his cell phone outside of visiting hours, he's not likely to answer it, but you can leave a message and he can call you back when he has free time. He has figured out how to use his phone!

Alex is also working on feeding himself, but hasn't really been to interested in real food today, even though he can eat whatever he wants. (Jeff and Judy, he's ready to take you up on your offer of ice cream!!!) Until he can get his required daily caloric intake with real food, he'll have that annoying feeding tube up his nose. Ugh!

Alex literally is getting better by the hour. Almost every hour he manages to do something he couldn't do before. Just imagine what some focused OT and PT will do for him! Tomorrow morning he and the OT will work on getting him his first shower since September 8. Boy, is THAT going to feel good!

The rehab unit is an amazing place. Nowhere else in the hospital do you hear people LAUGHING. Today during "group therapy," patients were playing UNO to work on their fine motor skills. We could hear them from Alex's room, and for once we were hearing a noise that wasn't annoying! I saw a board listing daily activities such as pet therapy...need to look into that for sure! Everyone we talked to today was thorough, efficient, professional, and caring.

This is definitely a unit where healing takes place.

Tuesday, October 20, 2009

Ok, Now THIS is REALLY Good News!

I went back to the hospital this afternoon after writing my last little post, and guess what??

Alex is being moved into the physical rehabilitation unit TOMORROW!

Yes, really. It's true. (Pinch me, I'm dreaming again.)

At this moment he is enjoying a turkey and mashed potato dinner with Aurora as his visitor. How lucky can a guy get? Real food, losing the catheter, a visit from his girl, and a FREE, ALL EXPENSE PAID TRIP TO REHAB!! (*snork* "Free," indeed. Can't wait for these bills...)

Once he's checked into the unit he will be put on a strict schedule, with scheduled PT times, rest times, and visiting times. They will be strictly safeguarding his rest periods, so as soon as I know his visiting hours I will post them here. He can also take phone calls (on his cell) during visiting hours. Another thing to know is that we will be having some friends who are massage therapists coming in to work with him during his visiting hours, so be prepared to be turned away occasionally. (These wonderful people are offering their services gratis; thank you so much!) When I know the number of the nurses' station in the unit, I'll let you know.

We don't yet know how long he will be in rehab. It may actually come down to how much the insurance company is willing to cover, believe it or not. The healthcare system in this country needs some serious overhauling.

Whew. Never a dull moment here. We're looking forward to a constructive, busy time. Thank you all for your support!

No News is Good News

I didn't post yesterday because we were getting Alex settled into the Short Stay Surgical Unit, a step-down ward, and he wanted me to stay the night with him. He still has some anxiety, for example he confessed that he's afraid to go to sleep because he's afraid he'll wake up and find out he's missed another month of his life...

I'm home for 1/2 an hour before turning around and going back to the hospital with some new supplies: Alex gets to SHOWER now, so I had to get his special medicated shampoo, etc. Alex also gets to eat REAL FOOD after a day and a half of Jello. His urinary catheter is coming out this afternoon, and he'll probably be off the trach by the end of the week. We could see him discharged from the "hospital" and admitted to the physical rehab unit as soon as the end of this week!!!!!

Gotta run - thanks for all of your prayers and support.

Sunday, October 18, 2009

The Best Day So Far

Alex seems to have turned a corner this weekend! This morning he was not only awake and alert, he was talking with his Passy-Muir valve on and making jokes! (Matter of fact, it was hard to get a word in edgewise!) He showed fewer signs of ICU Syndrome, and the sense of humor was definitely in evidence. His doctor suggested we take him outside for a ride in his recliner! So we packed him up, swaddled him in blankets, and took him out into the sunshine.

He was VERY happy for the change in scenery and loved seeing the beautiful autumn scenery on the hospital grounds. He's got ideas brewing in his head for all kinds of projects, and he's ready to be moved to the Short Stay Surgical ward tomorrow so that he can start the more active part of his recovery. Tomorrow he repeats the swallow test and we see if we can start him on Jello and broth. Today they took away the oxygen tube that attached to his trach and gave him a little oxygen nose piece, so soon he'll be breathing without any kind of apparatus.

I have several conversations worth of things to talk with his doctors about: Massage, acupuncture, "booties" to help with his "foot drop," and creating a routine for him to help alleviate the ICU Syndrome. It's nice to finally be thinking about these things, instead of thinking about more surgeries, ventilators, secondary infections, etc. We've entered a new phase. There will be hard days and easy days, to be sure, but at least we're not talking "life and death" anymore.

We couldn't do this without all of you. Thank you all so much for all of your support, encouragement, prayers, concern, and love.

Saturday, October 17, 2009

A Better Day Than Most

Last night I actually went home and slept in my own bed. I slept until 12:30, then got up and worked in the shop a little with my army of reinforcements who came to help sell pots during our Ithaca Art Trail Open Studio Weekend. Then I went to the hospital and found my hubby awake and talking with his Passy-Muir valve on his trach tube!

According to his nurse, Alex slept peacefully most of the morning. When I got there at 2, he was ready for some interaction. It's very clear that between the pain killers and the trauma of being in the ICU, he has ICU Syndrome, but he was more coherent than he has been in recent days. He was able to sit in the recliner for a half an hour, and it was such a relief to have him be able to SAY when he was ready to go back to bed, instead of trying to guess from the look in his eyes.

While he was in the chair he asked me to massage his arms and legs, and asked if we could get a massage therapist to come see him. The hospital doesn't have massage therapists on staff, which I think is very shortsighted, if unsurprising. The Finger Lakes School of Massage doesn't even send its students over to practice on patients because they want their students to get to see the improvements in health that massage can afford a patient over a period of time, and most hospital patients don't stay long enough. He's going to be in the hospital for weeks yet, if not months. Certainly someone with a case history like Alex's should merit the attention of a massage therapist, so I'm going to call the school on Monday and see if I can get someone to come work with him. The students work for free; they need to accumulate a certain number of practicum hours to complete their program.

He also expressed an interest in having some acupuncture while in the hospital; I know it would stimulate his lymphatic system and speed the healing process. I have to see if the doctors/hospital will allow it. I hope they will. Alex has also asked for us to arrange for him to have some EMDR therapy later in his recovery process; it's a technique that has been used successfully for treating post-traumatic stress disorder, which I think we can safely say Alex has...

Tomorrow we'll sell more pots, I'll visit Alex in the morning, and we'll get ready for Monday, when they'll assess him and decide whether we can get him OUT of the ICU. He has to meet certain landmarks in his recovery, so keep you fingers crossed. The sooner we get him out of there, the sooner he can really start to recover!

Friday, October 16, 2009

Now We Live in Stockholm...

...as in "Stockholm Syndrome," that is. Actually it's ICU Syndrome, and I think that both Alex and I have got it. Having your circadian rhythms disturbed while being trapped in a room and helpless, with people poking you with needles and feeling like you're going to choke all the time has got to be a form of torture. In fact, it is exactly the kind of thing people have used to torture others...but it is what also happens when you're in the ICU.

Combine all of this with the cocktail of drugs Alex has in your system, and it's enough to drive anyone bonkers. He feels powerless, he can't communicate, he's in pain, and he's hallucinating. Whoever thinks that painkillers are a recreational drug has a screw loose.

So, yeah. This week has sucked. I've spent less than 20 hours at home all week, "sleeping" in the ICU for 5 out of 6 nights. We're hoping that on Monday Alex will pass the milestones they're looking for in order to move him into the Short Stay Surgical Ward. They say the change in location will help immensely. No more monitors beeping at you all night, no more constantly being wakened for (sometimes superfluous) care and procedures, no more staring at the same 4 walls.

Please keep your fingers crossed and pull out your lucky talismans this weekend. We're hoping for a move from Stockholm to Ithaca on Monday.

Wednesday, October 14, 2009

What Comes Up...

Alex is getting a little better every day, but this first week of being awake has been rough so far. Hopefully easier days are ahead, and I'll be able to leave him and come back to work.

Right now he's needing someone with him at all times; I didn't expect that at this point in the process. He's coughing up the fluid from his pneumonia, and is constantly choking on his tracheostomy tube. It's scary and exhausting for him. I've become a "suction expert," clearing his tube before he starts hyperventilating. I think I'll have an honorary nursing degree before we're done here!

I'm spending nights in his hospital room jumping up to suction his tube clear so he doesn't panic. We're both exhausted, but unfortunately this is an unavoidable part of the process.

While he passed the "bedside swallow test" yesterday by successfully swallowing some water, some applesauce, and a small piece of cracker, he failed today's "more scientific" swallow test. The speech pathologist gave him some applesauce with blue food dye in it so that we could see whether he's aspirating things... and 15 minutes later he coughed blue goo out of his trach tube. Shoot.

It could just be that he's REALLY exhausted today; he hasn't had much energy at all. Not much talking, too much coughing, and they didn't even put him in his chair today, he was that tired. His mom had night duty last night, and she said he didn't sleep at all. He just coughed and choked most of the night. I think he's managed to get a little sleep today, but it's hard to tell. He certainly has spent a lot of the day coughing.

This part of the process really sucks. I hope we're through with it soon, but there's no way to know how long it will take. I'm home for a little while to take care of the cats, who are not adjusting well to the new food I'm slowly introducing into their diet; now I have cats with diarrhea who are getting dehydrated! I'll go back to the hospital to my night shift soon. Hopefully the nurse will hear him coughing from out at her station; they don't get in there very quickly, I hate to say.

Tuesday, October 13, 2009

Avalanche of Progress

We're having an avalanche of progress here in Room 11 in the ICU!

Today not only did Himself sit on the edge of his bed, sit up in a chair, and talk through a special valve on his trach; he also ate ice chips and Jello, and passed the "Bedside Swallow Test"!!! He successfully swallowed a sip of water, a spoonful of applesauce, and a small piece of a cracker without choking. He spent his second day "vent-free" and the ventilator is being moved OUT of his room tomorrow!

I finally got to read some of his get well cards to him. It meant a lot to him - he wanted me to read those instead of the new novel that he's been waiting to start! Thank you all for sending him your prayers and good wishes. Now that he's awake, he really appreciates them!

Alex is still coughing up the gunk that's been in his lungs. Luckily what he's coughing up is clear/white and foamy, which means there's no infection. Unfortunately, coughing it up means choking and it's very scary for him. I spent last night in his room, getting up and suctioning out his trach tube for him whenever he started to choke. Tonight his mom is taking "suction duty."

The more he gets up and moves around in PT, the more this gunk is going to come up out of his lungs, and it's good that he's able to cough it out himself, but it is exhausting, uncomfortable, and somewhat painful... the nurse says "No pain, no gain." Ouch.

Last weekend was the first weekend of the Ithaca Area Art Trail and we had the assistance of Vanessa, Sabra, and my Mom in the studio to help sell some pots. Thank you, you fabulous women. We couldn't have done it without you. This weekend, Marc, Carol, Sabra, and Hannah are on deck so that I can be with Alex during this challenging time. Thank you, all of you. There's a special place in my heart for each of you.

Special thanks also to Alex's mom for being the giggliest Grandma ever, and to Joe, Mary Ellen, Russell, Joseph, Dorothy, Gordon, and Carol for a lovely birthday dinner among friends. Mary Ellen also gets the Good Samaritan Badge for helping me get my ailing kitty to the vet. (Luna seems to be fine now, a few thousand dollars later...damn cat.)

The Best Anniversary Ever

Yesterday was the best anniversary ever. I'm sorry I didn't post sooner; Alex was feeling anxious and asked me to spend the night at the hospital with him. I just traded shifts with his mom so I can tend to my kitties, do some correspondence and get some sleep before going back to the hospital.

Not only did Alex smile yesterday; he TALKED. I have to hold my finger over his trach tube (he's too weak to raise his hands that high) and I have to listen closely, but he can talk!! He told me he loves me, and when our 12 yr old came in, he told her too. You can imagine how that made us feel! There's no anniversary present in the world that can compete with that one.

Alex spent last night breathing on his own, which is a HUGE step towards getting him out of the ICU. This is such a big deal; it's been our goal to get him off the ventilator as soon as possible. Looks like this will be the week it finally happens.

In his physical therapy session today, they helped him sit up and dangle his legs off the side of the bed. It was a challenge, and he needed help to do it, but he was able to sit up long enough to do some side-to-side stretches and some leg lifts. Again, this is a gigantic step forward. Pretty soon he'll be able to pull himself up!

He continues to regain more and more strength every day. I can't help but feel that he's tapping into all of the positive energy everyone has been sending our way. I can't thank you enough. Your support and encouragement helps me stay positive, and that helps Alex tremendously. We couldn't do this without you all. Thank you for a great birthday and a wonderful anniversary.

Sunday, October 11, 2009

Birthday Presents

Today instead of being at the hospital or being in the studio, I slept. I slept from 11am when Mom and I came back from the hospital until 3:30, when Aurora came in and gave me a birthday present. I slept with both my kitties, since my baby Luna was back from the vet's. The bed was warm and my kitties were purring, and I knew that Sabra and my Mom would take good care of the shop during our open studio sale.

When Mom and I saw Alex in the morning, he started crying when he saw my face. We couldn't tell how "awake" he was, since there was still sedative in his system. We couldn't tell how much he could understand or remember of what we were saying. It was so hard to know what to do, what to try and tell him, what to ask him. It was awful. Leaving the hospital was the hardest thing I've ever done, but I was at my wit's end and I thought my stress would make his stress worse.

After my nap, I met Sabra and hung out in the studio with her and Mom. We sold some more pots. Yay! When we closed, Sabra headed back to Rochester, and Mom took me to Mary Ellen and Joe's for my birthday dinner. YUM. I am definitely getting spoiled when it comes to meals!

Mary Ellen brought me home, but first we stopped at the hospital. Alex was awake and more cogent than he had been in the morning. He was obviously trying to tell us something, and it wasn't about being in pain or needing to be repositioned. I asked him, "Are you trying to tell me that you love me?" And he smiled. HE SMILED!!!! That's when I knew how aware he was. He wanted to know what happened, so I gave him the brief recap of the last month, and told him that he's going to be perfectly fine. That seemed to ease his mind. I asked him if he knew what day tomorrow was; it's our anniversary. He was looking past me at the wedding photo I had put in his room. I asked him if he wanted me to bring our wedding album in tomorrow and his eyes lit up.

Now I ask you, what more could a woman want for her birthday?

Saturday, October 10, 2009

A Day of Large Improvements

It seems that today, the day I had to spend in the studio for our Art Trail Open Studio, was the day Alex chose to have major breakthrough. I missed it. I'll miss it again tomorrow because I have to be in the studio again. I'll see him in the morning when he's still sleeping and in the evening when he's just gone back to sleep after being put through his paces all day....sigh. Oh, well.

Today Alex sat up in the recliner for 4+ hours, and was breathing well enough that they took him completely off the ventilator for part of that time. And he held his own in the breathing department!!! His nurse said he looked comfortable for all but the last 2o minutes of his time in the chair, whereupon she gave him some more pain meds and got him back into his bed.

They put him back on the ventilator for the night, and gave him a little more sedative so that he can sleep, but tomorrow they'll get him up and working again.

He was more cogent today than yesterday, and was able to nod or shake his head to reply to questions about his pain and comfort levels. His mom held her phone up to his ear and I talked to him. She said he was trying to say something; his mouth was working but he couldn't get sound out. I'm not surprised, after all, he hasn't spoken for 3 weeks and he's had a tube in his throat.

So I may not get to see his eyes open for my birthday because I'll be in the studio, but I might get to see them on our anniversary, which is Monday. I like that thought.

Friday, October 9, 2009

"Tough Love"

Today was pretty much like yesterday, with poor Alex drifting in and out of consciousness, feeling confused and in pain whenever he woke up. It's so incredibly hard to watch. Dr. Hannon believes in "tough love" in this situation; we have to put him through this discomfort in order to wake him up and get the healing process started. I hate this so much, I can't even tell you.

The good news is, they took the tube out of his chest that was used to drain the pleural effusion, so he's more comfortable. They also took out the "PIC" line that was in his arm. It's kind of like an IV on steroids; they insert a tube in his arm and run it through the vein and into the chest.

The bad news is the *reason* they took out the PIC line: When they removed the IV line from his chest to move it to a spot under his clavicle, they took the tip and tested it for bacteria. It came up positive, so he has an infection. They don't need the PIC line now that we're reducing the number of IV meds he's on, so they took that out, assuming that it may also be infected.

So Alex is running a fever again, and they've changed his antibiotics again. Oh, and the old antibiotic seems to have given him hives all over his torso, inner arms, and legs. How fun is that? This poor man has been on antibiotics for a month, plus an antifungal for the yeast that spilled into his body cavity. He can't have much intestinal floral left at this point.

The hospital is not a place to go to get well, really; the cures are always at least as bad as the disease. I know all these things are saving his life, but they're certainly not good for his overall health! I'm grateful he didn't die, but it's hard to watch him struggle with problem after problem as a result of the wonders of modern medicine. It just seems like such a paradox, kind of like "tough love."

Wouldn't it be sweet if Alex were cogent in time for our wedding anniversary on Monday? It's a nice dream, anyway...

Thursday, October 8, 2009

Weaning Woes, Part II

Yesterday's tracheostomy went off without a hitch, so today they started the process of weaning Alex off the sedatives and waking him up. It's a lousy process. He's drugged enough that he can't move much, but he's more aware of what hurts or is bothering him; and he can't tell you because he can't talk with the trach/ventilator combo. Talk about frustrating.

He must also be pretty disoriented, because the last thing he knew, he was going in for an emergency surgery 3 weeks ago. What a crappy way to wake up.

It's hard to watch because there really isn't anything I can do to help him; he's still so medicated that he has no sense of time. Minutes feel like days to him. If you tell him, "They're going to give you more pain meds soon," or if you even name him a time or a number of minutes, all he knows is that he wants them RIGHT NOW because everything hurts.

I try to reassure him, but when you have no concept of time, it feels like you're going to feel like hell forever. I was feeling stressed just watching him be so uncomfortable, and I was starting to think that he was picking up on my stress. So, once again, just as I did the last time we tried to wake him up, I left. It was hard. I'm still kicking myself, feeling like I abandoned him, but the nurses said, "Nope, you're doing the right thing. Go home and get some sleep."

I hope this process isn't too protracted, because it just sucks.

Bill of Large Denomination

I'd like the thank the mystery donor who tucked a Bill of Large Denomination into my checkbook this week. That was a very generous and thoughtful gift.

Wednesday, October 7, 2009

At Last

I've been trying to think of some clever title for this post about Alex finally getting his tracheostomy, like "Hole in One," but somehow I just couldn't get it right... I think at this point I'm still in a state of denial about this whole situation, and I'm waiting for the other shoe to drop on us for the umpteenth time. There have been so many complications and set backs, but yes, the surgeon successfully performed the tracheostomy and the next step is starting to wake Alex up.

Pinch me; I'm dreaming.

Tuesday, October 6, 2009

95 and Holding

Alex's oxygenation rate is holding at 95%, and his ventilator settings are at target for the tracheostomy to occur. It's scheduled for 3pm tomorrow, but will likely be later than that as the surgeons start to run behind schedule. Everybody pray that nothing happens between now and then to delay this again!

Monday, October 5, 2009

Cautiously Optimistic...

that's what we're calling ourselves today. When I walked into Alex's room this morning, his pressure and oxygen settings were "at target" for performing the tracheostomy. We have to wait until Wednesday, when the surgeon is available, since this is considered an elective surgery. We had to do this last time we were ready for a trach and we ended up with pneumonia while we were waiting for the surgeon. Let's hope nothing similar happens this time.

Ok, everybody cross your fingers and hold your breath...

Sunday, October 4, 2009

Inch by Inch...

Gee, I guess there's a huge overriding theme to all of these posts, eh? How many more metaphors or expressions can I come up with for slow progress?

Today when I left the hospital at 2 they had lowered the pressure setting on Alex's ventilator another notch. One step closer. His vital signs continue to be good, and he's resting comfortably.

The nurse noticed a rash on Alex's abdomen, on either side of his incision, but far enough away from it to not be incision-related. It could be some kind of simple surface skin rash; it could be evidence of some kind of infection or abscess in his belly. The surgeons palpated his abdomen and found nothing unusual. The fact that his temperature remains at basically normal and that his vitals are all good would support the notion of a simple skin rash. We're going to have to watch his temp, and if it goes up, do another cat scan of his belly. There's more film of this guy's abdomen than some actresses have in their whole career.

If all remains well, we may be able to move forward to the tracheostomy this week. Wouldn't that be something? Please keep those prayers coming - we're getting close!

I had a lovely surprise visit from my aunt and uncle, plus my cousin, her hubby, and their wonderful toddler. Just what the doctor ordered! It was nice to hear a little happy voice in the house. Yay. Thanks for coming to see me!!!

Saturday, October 3, 2009

One Toke Over the Line

For some reason watching Alex's oxygen saturation levels and constantly talking about his lungs is making me think of that song:

"One toke over the line, sweet Jesus,
one toke over the line --
Sittin' downtown at the railroad station,
one toke over the line..."

(Am I even remembering those lyrics properly?)

Measuring every little breath and basing your life's happiness on every one of those measurements is a sure way to insanity, but there you have it; that's what life has been all about for the last month. It's hard to think about anything else, but I try. Thinking of groovy songs from my youth helps!

Today we had a good day. Every time they moved Alex to prevent bedsores, to change his linens out from under him, or to check his wound, he handled it like a seasoned pro. No fits and starts like yesterday. His temp has stayed at 99.5, which is practically normal for someone who has as much inflammation as he has. They were able to lower both the oxygen level and the pressure level on his ventilator, taking us one notch closer to the tracheostomy.

They're lowering one of his sedatives to start waking him up very gently; when asked, most times he can open his eyes, but they're fogged with the mist of fentanyl, a powerful pain killer related to morphine.

This is our favorite season, Alex's and mine. We met in October at the Ithaca Friends of the Library Sale, and 2 years later we married in October. Today was the kind of day we wait all summer for; clear, crisp, beautiful leaves...I hope he will be able to see some of this October, if only from a hospital window.

Thanks for all the prayers and positive vibes. I try to pass all of them on to Alex by reading the cards people have sent him, and telling him who has asked about him and/or has sent good vibes his way. He's sedated, but he does hear us, though he may not remember what was said after he wakes up. I feel sure that all your support and encouragement get to him somehow and help him. I don't know how to explain it, but I do believe it.

Friday, October 2, 2009

Of Sat Levels and Other Things

Of saturation levels and other like things I have become painfully aware. I had no idea of the amount of medical knowledge I would gain through this process... more than I want to know. I'll try not to bore you with the minutiae; suffice to say that earlier today Alex was not doing as well with the breathing thing. When we came back around 6 with Aurora, he was doing better. AND his temp stayed down AND he opened his eyes for me when I asked him to.

He is one tough bugger.

All these ups and downs are hard on us; they must be harder on him.

He's going to be so tired when he wakes up.

Thursday, October 1, 2009

Yet Another Day of Small Improvements

Today's xray showed the same amount of fluid in the lungs as yesterday. In my book, that's a win; we didn't take a step backwards. Alex's temperature came back down into the 99's all by itself without Tylenol; another win. His ventilator settings are slightly better than yesterday; again, an inch forward is better than an inch back.

When changing his wound dressing today, the surgeon found some pus and infection. Apparently that kind thing can develop fairly rapidly. They irrigated and repacked it; I'll spare you anymore details. (I am becoming less and less squeamish daily, but then I'm seeing this every day...) His temperature had started to go up during the day today, and we think it can be attributed to the wound infection. I haven't called back to the hospital, but I'm hoping his temp has started to drop again after the re-dressing.

We're trying to keep Alex as quiet as we can while his lungs recooperate. I've brought in CDs of his favorite bands to play on the boombox some brilliant nurse brought in. Music has always been so important to Alex; as most of you know there's always music on in the studio and the house. Some familiar sounds (besides our voices) can definitely have a calming effect.

We hope that tomorrow will bring the absence of fever, and more improvements in the lungs and the oxygen saturation levels. No big steps today, but no backsliding either. I call that a good day.

Wednesday, September 30, 2009

One Breath at a Time

That's how we're taking it these days. Last night Alex managed to keep his temperature down, and his oxygen saturation improved bit by bit. Today his temp was still around 99 until about 5 when it started to come up again. Could just be his body fighting the inflammation; we don't yet know if the fluid in his lungs is growing any "bugs". (That's the term the doctors use, really!)

They were able to adjust the pressure setting and the oxygen flow setting on his ventilator today, lowering them as he became better able to oxygenate his blood. Will see what things look like tomorrow morning... it's a roller coaster.

This morning's xray showed less fluid in both lungs than what they found yesterday. This is great news and we hope that trend continues!

His heart, kidneys, liver, and digestive system all continue to function well, thank heavens. If we can put this pneumonia in its place, we can get the trach tube in; if we get the trach tube in, we can start to wake him up and wean him off the ventilator; once that happens, he can get up and walk and finally get well. They say once they get up, patients improve immeasurably.

Looking forward to that day...

Tuesday, September 29, 2009

Just Breathe

I keep telling Alex that all he has to do is keep breathing...

That's a little harder for him to do now that he has fluid inside his lungs. The "pleural effusion" they drained yesterday was fluid between the lung and the chest wall. We weren't happy with the fact that draining that stuff out didn't result in a marked improvement in his oxygen saturation levels. Dr. O'Mara ordered a full contrast CT scan to see what was up inside our boy. We found no blood clots, no internal bleeding, and no abscesses. What we did find is that he now has fluid inside his lungs, a.k.a. pneumonia. Now, this fluid doesn't necessarily have any bacteria growing in it, yet, but its presence does make it harder for Alex to breathe and oxygenate his blood.

They can't suck the fluid out because the procedure is more invasive than his present oxygen saturation levels can tolerate. So the best we can do is give him an antibiotic known to kill the bugs most likely to want to grow in his lungs, give him a blood transfusion to help replace the blood they draw daily for tests, stop the blood thinner he was on when we worried about clots, and rock and roll him in his bed to get the fluid to break up and shift. Once it has broken up, he'll be able to reabsorb it into his system, like a sponge sucking up water instead of trying to suck up jello.

All of this will take time. Once his oxygenation levels are better, we can think about doing the tracheostomy and start waking him up and weaning him. But his system can't handle the shock of a surgical procedure, even a minor one, right now, so we have to let his body kick this thing.

The good news is, his heart is still strong, his kidneys are still working, his digestive system is kicking in, and his fever this afternoon was the lowest it's been since this whole thing began 3 weeks ago. This guy just keeps on fighting. He is double-tough.

Alex's brother Martin, who went through a horrendous accident and equally horrendous recovery, says that "Every thought is a molecule." Thank you for all your thoughts and prayers.

Monday, September 28, 2009

A New Doc in Town, and No "Trach" Today

The wonderful Dr. Tiru, infectious disease specialist, is on her way back to her hospital in NYC and won't be back until December. Today Alex has a new doctor, Dr. O'Mara, who is a pulmonologist (sp?) or lung specialist. Perfect timing!

Alex's oxygen levels and fever continue to improve since the draining of LOTS of fluid from his chest, but Dr. O'Mara decided to wait on the tracheostomy until he's slightly stronger. Works for me. I don't really need to see my husband go into respiratory arrest this week...

I keep telling myself that these little setbacks are just that, and that he will be turning the corner soon. I hope I'm right!

Sunday, September 27, 2009

Next On the Menu...

Pleural effusion with a side of blood clots... Yum...

They inserted a tube drain into Alex's chest and drained 450ml of fluid out of his left side. That's a lot. They're culturing it to see what's growing in it, but in the meanwhile he's on broad spectrum antibiotics that should handle the most likely suspects.

They were expecting that his oxygen saturation levels would improve after the drain, but they didn't. The next most likely problem is a blood clot in the lung, so now he's on blood thinners to help with that. They'll stop the blood thinners 6 hours before his 10am tracheostomy.

I keep saying that Alex doesn't do anything "small." I'm ready for "small" now... this illness just keeps growing arms and legs. It's going to be a long recovery indeed.

Thanks for your support, everyone! Special thanks to Ken and Carol for coming with me to the hospital and helping me think of all the right questions to ask tonight. It helps to have medical professionals amongst your "nears and dears." We are truly blessed.

Saturday, September 26, 2009

One Door Closes, Another One Opens

They have tried a few gentle ways of waking Alex up today, but now that they've found some fluid in his right lung, they're going to let him rest. This little wrinkle is often referred to as "hospital pneumonia" and happens to people who have been on ventilation for a long time. The surgeon will do the tracheostomy either tomorrow or Monday, depending on his schedule. The "trach" should actually help with the fluid and the labored breathing associated with it. With the shorter tube, his throat and lungs will be less irritated.

Once you have one complication, it opens the door to the other possible complications. Luckily Dr. Tiru is right on top of things and is going after this lung fluid with everything she's got. At this point he's in no great danger from this fluid, it's just another delay in his healing process. They're culturing it to see what kind of bug it is, but the culture will take days. In the meanwhile he's already on a broad-spectrum antibiotic that is known to kill the most likely bacterial culprits.

The awesome news is that the original infection, the sepsis, is under control and is waning. This is very good news because that means 1.) He's getting better and 2.) He's getting better and 3.) He has more energy to fight off the pneumonia.

It's hard to get a picture of what this recovery is going to look like. No one can know for sure because we never know when something like fluid in the lungs is going to present itself. It's safe to say that Alex may be in the hospital for another month, and after that, the at-home recovery will take months.

People have asked about visiting Alex. You are more than welcome to, but there are some things to think about: First, you may want to call the ICU ahead of time and ask if/when he can have visitors. Be prepared for the nurses to tell you that "now is not a good time." They also can't give you medical information about his condition; it's the law. They have to safeguard his privacy especially while they're doing certain procedures, and they have to safeguard his rest. If they do let you in, they'll only let 2 people in at a time, and only for a short time. If you have a cough or the sniffles, or know that you have been exposed to someone with the flu, PLEASE wait to visit him. His body can't take the risk of exposure to any more bugs. After he first wakes up, these rules will become even more important for them to enforce.

Thank you all for your support, generosity, and prayers. We're on a long road, and it helps so much to have such great fellow travellers.

Friday, September 25, 2009

I'm Still Waiting...

The docs have decided to try a slightly different approach to weaning him this weekend before they give up. There are some kinder gentler ways they can adjust his medications to wake him up. If they feel like they're just aggravating him and wearing him out, they'll stop ASAP. And if it looks like he can't "wake up and wean" through this process, they will do the tracheostomy on Monday.

This poor guy has been through so much. For someone who's been sleeping for 2 weeks, he is DEFINITELY going to wake up exhausted!

Fingers crossed. I found a 4 leaf clover on the hospital lawn. If only luck were that simple...

Thursday, September 24, 2009

Every Breath You Take...

Apologies to FaceBook readers for the duplication of information...

I'm hoping that the doctors are going to ask for permission to give Alex a tracheotomy tomorrow; putting in a trach tube will mean we can take out the full throat tube and relieve a considerable amount of discomfort. Then waking him up will be much easier to do. THEN he can start the ACTIVE part of the healing process, getting his muscle tone back, etc. There's little risk of any sort in doing the tracheotomy, and it may save him a lot of stress that will only serve to delay the healing process and wear him out. As stable as he is at this point, there's only so much he can do at this point without some kind of intervention. The current ventilator tube is triggering his gag reflex, so now that he's less sedated, he feels like he's choking all the time. What a nightmare. Luckily the sedative that's in his system may be enough of an amnesiac (?is that the word I want?) that he won't remember, but the less he has in his system, the greater the chance is that he will remember and be traumatized.

Breathing's pretty important, but it sucks when you feel like you're constantly choking and your vocal chords are getting abraided. Fingers crossed for the docs to decide that he's had enough!

-Nancy

Wednesday, September 23, 2009

Weaning Woes

They've started weaning Our Boy off his sedatives, so he's becoming more aware. They have to do that in order to wean him off the ventilator. He has to basically consciously exercise his lungs again because the machine has been doing the work for him. This all means that he has to go through the discomfort of being awake with a ventilator tube shoved between his vocal chords and down into his lungs. It's very uncomfortable, especially after over a week. There's a balancing act that the doctor has to do with keeping him comfortable enough not to stress him, but uncomfortable enough to wake him up and get him off the ventilator as soon as possible...

It's like watching a mother cat wean her kittens... it seems so cruel, and yet it's good for them, and they're crying piteous little cries. Alex isn't crying (yet) but he's grimacing and wincing. It was stressful enough that I felt stressed; I didn't want him picking up on my stress, so I came home to try and relax and let the wonderful CMC staff help him through this. Cindy and Anne (2 great nurses) said that was a very smart choice, so I'm trying not to feel guilty. Ugh.

Weaning sucks.

Sorry, bad pun.

-Nancy

Tuesday, September 22, 2009

Poo is a Beautiful Thing

Parents remember that relief the first time their toddler actually made it to the potty and proudly announced their accomplishment.... Alex can't speak right now, so I'll say it for him: Alex made doo-doo in his colostomy bag. Yes, I'm punchy; 2 weeks without sleep will do that to you, but yes, this is a big deal. It means his digestive system is working. It means he's absorbing nutrients, which will help him heal and will help him reabsorb and flush out all the fluids that are trapped in his "third space."

Whew. Toilet training is over. Now for the hard part.

They lowered his sedative to start to wake him up a little today; when he stirred, he opened his eyes and grimaced, then choked on his ventilator tube. Doesn't sound too comfortable, so they increased his pain meds a little but kept the sedative where it was. Slowly as the pain abates, they'll be able to lower both, and start to wean him off the ventilator. Waking up is the hard part. It hurts like the devil, and it's very disorienting. Please keep some good vibes going Alex's way during the next few weeks. They're going to be hard.

Thank you all for the outpouring of support and care you've shown us. We are truly grateful to know such excellent good friends.

Monday, September 21, 2009

Slow Cooling

Another day of a sub-101 degree temp. This kiln is densely packed and taking a long time to cool! Seriously, we still run the risk of Alex developing abscesses in his abdomen, in which case his temp will spike again and they will have to go in again. If we get through the next few days, we may just make it through with a nice smooth matte finish... ok, enough of the pottery imagery.

My boy is still fighting and we're still here.

Sunday, September 20, 2009

Another Great Day at the Solla Ranch

My hubby's temperature has dropped considerably since yesterday's procedure - 99.2!!! Which means he is on the way to kicking this infection without having to struggle against anymore toxic goo in his body cavity...Wow. It took a week, but we're on the road now. This is going to be a long process, especially when it comes to physical therapy. They cut through all of his abdominal muscles, and he relies on them to help get up out of chairs and beds without straining his bad back. We are all breathing a little easier, but we'll feel even better in a week or so... A big thank you to the staff at the ICU at Cayuga Medical Center. They are the finest kind of people imaginable.

-Nancy

Saturday, September 19, 2009

"Fetchez Lavage!"

(Apologies to those who aren't Monty Python fans... that's a random reference for sure.)

Today we saw Alex go back to surgery for a procedure called "lavage," which is the French word for "washing." The doctors suspected that the reason Alex still had a fever despite all his antibiotics was that there was still some toxic goo left in his abdominal cavity. So they went back in, and literally washed his internal organs. This is not an uncommon thing to have happen to peritonitis patients, and we may have to do it more than once. It's not seen as any kind of set-back; on the contrary, it's helping him get over the hurdle so he can stop fighting so hard to get well.

Every day I learn things I didn't know - and maybe didn't want to have to know - about the human body. Who knew you could take someone's bowels out, sanitize them, and put them back in?

After surgery Alex had a small period of a VERY fast heart rate, but they were able to stabilize him and they're rechecking his heart's condition just to make sure it's ok. They're being extra cautious with him, and I certainly appreciate it.

Tonight our former apprentice Dana is arriving from California to spend a few days with us; I hope she brought warm clothes because we're taking Aurora to hockey practice Tuesday night! Tomorrow Dana and Aurora are baking cookies for the fabulous ICU staff. They work so hard and deal with such difficult situations. They need to know they're very much appreciated.

Thanks for all your good vibes and prayers.

-Nancy

Friday, September 18, 2009

Another great day for Team Solla

Every day has been a day of small improvements for Alex in this recovery process. Today they removed his IV painkillers and then tested his awareness. He was able to open his eyes on command, but wasn't able to squeeze the nurse's fingers. It could be he was too weak to do that, or that he wasn't awake enough to process that more difficult task, but it doesn't really matter: the fact that he could open his eyes when asked is a great step in the right direction!

The doctor ordered a CT contrast scan today to check A's belly for abscesses, an unfortunate possibility in this scenario. No sign of any today, but they may yet develop. The scan will be repeated on Monday, but for today we'll celebrate the lack of abscesses!

Aurora came to visit her dad for the first time since his emergency surgery on the 14th. Terri, the RN assigned to Alex's care today, explained all the tubes and needles sticking out of Alex and gave her an idea of what his next challenges are. Granny VanWormer (Nancy's mom) is here until tomorrow night to hang with Aurora and I, and then Dana, an ex-apprentice, is coming in for a few days.

Thanks for all the good vibes. It helps more than you know.

Our saying has become, "It's All Good."

-Nancy

News from the Hospital

Hi folks -
Alex's wife Nancy here. Alex is still in the hospital after complications arose post-surgery. He has peritonitis and is very seriously ill, so it may be a while before he's back at a computer. At this point he is still in the ICU and has been kept fully sedated. He has made small improvements every day, and we are hoping for a full, if long, recovery. Many people have asked how they can help. I'm in the process of figuring that out; as his proxy I have had to focus on decisions his healthcare during this very critical time and haven't had much time to think ahead. I will certainly let folks know what I need when I have the time to think about it! I feel so lucky that we belong to such wonderful communities; the clay community, the community of Ithaca/Trumansburg, and the Cornell University Library community. Everyone has been so supportive and helpful during this difficult time.

Please keep Alex in your thoughts and prayers during this challenging time, and thanks for your support and care.

-Nancy

Wednesday, September 9, 2009

Treasures Found in a Week's Time



A week ago, I bought my first Nikon Speedlite SB-600, and life has not been the same since. Today I found another one via Craigslist. Here are the rest of my treasures from this past week. We found a killer Manfroto tripod with a sweet ballhead. My lightstand and shoot-thru umbrella arrived. Together, all of this fun stuff, combined with a 85mm f1.8, and a TTL patchcord... all of this has made my week a TON of fun. Like a kid in a candy shop, I have spent the better part of the week trying new ideas with flash every chance I could! Next up: during my recuperation, I aim to study up on the "Strobist" method of lighting so I can push my lighting skills to the next level. Should be fun.

Sunday, September 6, 2009

A Bug Flew Up My Nose



Well, not really, but this image sure looks like something went up her nose! We spent the afternoon outside playing with flash. Trying to figure out how to deal with background lighting vs. subject lighting. So much to learn!







Saturday, September 5, 2009

Glazing Up a Storm










As I get ready for surgery, I am faced with a mountain of bisqueware. I have tried for weeks now to get enough pots made to keep this place flush with pots. Tonight, all I saw were pots covered in glaze on every surface in the studio. Now that the boards are all put away, tables cleared,... it's time to fire. Tomorrow our toaster will finish firing and by breakfast it will begin cooling. Monday morning, while everyone else is celebrating Labor Day, we'll be unloading pots, packing pots and getting orders ready to ship out. No rest till the surgeon calls for "lights out".

Friday, September 4, 2009

Trying to Get Ahead
















Getting ahead is oftentimes a pointless endeavour. During the Winter 2008-09, I tried my darndest to get ahead. I figured if I threw enough pots, we would have enough to carry us through the Summer and into Fall. We did great. We have consistently had mountains of bisqueware just waiting for an open kiln. And yet we never got ahead.

Inevitably, something goes awry. First it was an acute case of diverticulitis that way-laid me back in June. Tuesday I go in for surgery to resect my colon. No fun. It means I will be down and out for 4-6 weeks. For the first two weeks, my mom will be here (from Miami!). R&R is such an uncommon thing around here. The concept of actually relaxing and recuperating is such an anomaly. But I am going to be a good patient, and I am going to utilize my time out of the studio to work on other non-clay things.

I have decided to dive feet first into the Strobist-world. Just in case you've never heard of Strobist, check out David Hobby's blog. If you make images with a camera, you'll find his blog an endless source of information and insight.

I also aim to begin working on articles I promised myself I would write during the winter. I think this will also be a perfect time to pull together various ideas for classes I would like to teach. Writing a curriculum always stirs up writer's block in me, so this is a fine opportunity to reach around the subject from the other side.

Until I am back in the studio, Hannah, Nancy and Aurora will have to make do without my throwing. I have made a pile of pots this past week, and hopefully will see many of them glazed before the end of the month. Here's a quick shot of what's been happening in the studio this week.