Not Quite Normal...

Ok, quit the wisecracks... (Yes, you!)

After this odyssey into hospital-land and near-death experiences, our family is starting to settle into some kind of not-quite-normal routine. I'm going back to work next week, which should make life a little more "normal," and Alex will be home alone, just as if he were working in the studio, the difference being that he will be working on physical therapy exercises and resting.

The Girl is now able to be with us on a semi-regular schedule, the difference there being that her mom and step-dad are getting her to and from her hockey practices and games. Thank heavens for family!

Our fabulous friends Marc and Carol did our grocery shopping for us this week, going above and beyond by picking up some LOVELY things that weren't on the list we sent them. (The Kid says thanks for the olives! I say thanks for the Ghiradelli chocolate chips!) Where would we be without our friends? So many have stepped in to help, it's hard to list them all...

It's weird to think about leaving Alex alone, but I should trust that he's getting around better and that he is stronger than he was when he first left the hospital. I just feel so protective of him after everything that's happened; it's hard to relinquish the role of "Mama Bear" after having to watch over him in the hospital. Hopefully he'll remember to email me and let me know that he's ok while I'm at work!!!

It's all very strange to think that while I'm at work, Alex is at home, and the Girl is on a more normal schedule, things are not the same. They will never be the same. Our lives have been forever changed, in so many ways. To all our friends and family, thanks for taking this road with us.

November Neutrals

Now that the smoke has cleared and we're settling into a routine with Alex's recuperation, I actually have time to do FUN things on the computer! One of my favorite things to do is "shop" without spending money, and with the medical bills piling up, I'm going to have lots of opportunity to do just that! ;-)

Here are my picks for a versatile, elegant, neutrals-based wardrobe. I would mix-and-match these happily for months!

En Vogue Jacket from ModCloth

A Thousand Tiers Dress from Anthropologie

Stacked Smoke Heels from Anthropologie

Creature Comforts Cardigan from ModCloth

Iced Rosettes Clutch from Anthropologie

Ice Cape-ades Jacket from ModCloth

Recital Dress from ModCloth

Pleats-and-Thank-You Dress from ModCloth

Mod's-the-Word Dress from Anthropologie

Scarf-Tied Oxfords from Anthropologie

The Parlour Dress from ModCloth

Woodward Cardigan from ModCloth

Converging Roads Sweater Dress from Anthropologie


Three Days of Peace Shrug from ModCloth

Struthio Platforms from Anthropologie

Home Free

Alex is "home free" as we used to say in hide-n-seek. We've got a new railing on our tiny stairway, thanks to Steve; we have a rental "hospital recliner" on the way thanks to the Salmon/Sherrills; we've got a chauffeur for Alex's first acupuncture appointment on Monday; we've got my parents coming over for the day tomorrow. Whew. Four things down, a million to go...

It's interesting to look at your house from the perspective of someone who is differently-abled... Cat toys on the floor, spilled water, laundry baskets all become hazards. We've got some rearranging to do!

Thanks to everyone who helped us get to this day. As tired as we are, it's good to be home.

Almost Free

Alex is being released from the hospital this Friday morning. We never thought we'd see this day! He has lots of physical therapy ahead of him, but he's doing so incredibly well. We're both busy with all the arrangements that need to be made, all the paperwork, etc., but it's such a wonderful feeling to know we're leaving the hospital!! Thank you to all of you for all of your support so far. It's been a long journey, and it's not over yet!

Once Again, No News is Good News

Alex is now able to shower without help, walks with a walker, and has a laptop so he can write his own blog posts!!! Yay!!!

I'm watching back episodes of "Dancing With the Stars" and snuggling my kitties. Life is good, but will be better when my boy is home...

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!

Alex managed a short post to his blog 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. If you want to check his blog, look at the link in my sidebar.

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.

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!

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...

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 his blog!

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.

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.

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.

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.

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.