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


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


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


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... 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.