D-Day (Decision Day) Pt. 2: Dr. Gardner

Well,  Dr. Gardner surprised us today.  For our 3:00 appointment, we began seeing doctors at 4:30!  First, Stephanie with her post-op survey.  Then _______, who took blood pressure and pulse (normal). Then a new guy, Dr. Shaffer, who helps out when neurology is overbooked.

(Who notices the typo above?  Really, they could use a proofreader!)

Dr. Shaffer quickly showed us the before and after MRI pictures, but he didn't make it clear to us what the differences were.  When Dr. Gardner came in, it all made sense.  I remember a shot from pre-op MRIs showing how the tumor was pushing the base of the brain to the side.  He found that one and then, side-by-side, showed us how much the brain is already expanding.

I don't know if you can tell below, but on the left is before: the dark L-shaped thing in the middle is the base of the brain/top of the spinal cord.  On the right is after: the L-shaped thing is "puffing out" to take up space where the tumor used to be.

This one is a couple mouse-wheel turns away on the MRI and not as clear.  Maybe you can use it to get a good look at the tumor.  I was surprised that there was still a white area where the tumor used to be.  But you can see that the texture is different and Dr. Gardner said that was fluid filling the space formerly occupied by the tumor.

I can't remember his exact words, but they were to the gist that the success of Michael's operation was "remarkable".  With the improvement he's already seen with his double vision, Dr. Gardner thinks it will for sure correct itself in the coming weeks.

But he didn't sugar coat that Michael is still in real danger of getting meningitis.  We have to watch for liquid running out his nose or feeling it run down the back of his throat.  He said if Michael was feeling well the next couple of days he would leave it up to us when to leave.  But we had to promise him that if anything went wrong, we would turn around and come back immediately.

Other than that, though, we may have seen the last of Dr. Gardner.  If all is well, we don't do anything until six months when Michael gets another MRI.  That can be done in Kansas City and the results sent here, or we could come back here to see him.

As of right now, we're thinking about getting up and heading out first thing Friday morning.  That would put us in Chicago overnight Friday and then home SATURDAY NIGHT!!!  Part of me is surprised that Michael didn't want to get in the car tonight and drive away; however, he is first and foremost concerned for his health and doesn't want to jump the gun and regret it.  If we can finagle dog sitters for three more days, I think at this point Michael, Toby and Cosmo can wait a little longer.

I asked Michael if there were any sites he wanted to see the next two days.  He replied, "Only if they're in the rear view mirror!"  We never made it to any of the museums or on a movie location tour, but I think all I want to do is make one more pass through Eide's entertainment tomorrow (new comic book day).  We've been here long enough to have a good feeling of the city; besides, if we saw it all now, we'd have no reason to ever return (ha, ha).

Again, Michael claims all his pre-surgery symptoms are gone: he can swallow, he can walk without stumbling, he can feel the fingertips of his left hand and he can button his shirt.  It remains to be seen if he's still going to be falling asleep all the time.  Of course he is now because he's just had brain surgery, but if we can extend our nightly bedtime to 9:30 or 10:00 in a couple months, then it will have been a complete success.

If nothing goes wrong, there will probably be only a few more short posts on the blog... about him, anyway.  Now that I've hooked you, please come back to read about other subjects, also.  I'd hate to put someone in the hospital again just to get readers...

D-Day (Decision Day) Pt. 1: Dr. Wang

Maintaining his perfect record, Dr. Wang saw Michael very close to his scheduled appointment time.  Actually, Dr. ______ saw him first and promptly removed the packing from his nose: 4, 6"-long blood-soaked strips.  This doctor (female) was interesting; she appeared Asian, yet spoke with an Australian accent.  Michael asked her and, yes, she is from Australia.

She scoped his nose pretty well, as did Dr. Wang afterwards.  It all looked like alien, lumpy, bloody tissue to me, but he claimed it looked "great".  I asked him how he knew that and he replied, "Because spinal fluid is not pouring out." 

In essence, Dr. Wang released Michael for follow-ups with a doctor in Kansas City.  For another week, he'll continue to spray saline solution into his nose every four hours.  Then, he'll add a twice-a-day flush.  There are two plastic "splints" remaining to be removed; they are covering areas that are healing beneath.  And he'll need occasional nasal "cleanings" to remove dry, crusty… stuff.

Michael immediately felt relief from the pressure in his sinuses.  For the last couple of days, he's experienced headaches he's described as his "eyeballs hurting".  However, he still is on the cusp of a headache post-removal, so I'll continue administering Tylenol, sometimes regular, sometimes with Codeine and sometimes "PM".

We're thrilled to be 50% "released" and hope Dr. Gardner concurs in his assessment this afternoon…



Exploring Downtown Pittsburgh

To start where we left off, here's a better picture of Andrew and Elizabeth's edible arrangement.  It wasn't long after my last post that we opened it.  The chocolate-covered fruit is SO delicious!

That was, when, Thursday night?  We haven't done a lot since then but sit around and recover at Family House.  Michael is mostly good, with a few ups and downs.  Yesterday, he thought his vision was better and we went for a little drive to take Mari Ann to church.  But this morning, he has the worst headache since the operation and is taking Tylenol with Codeine to relieve it.  Yesterday, his appetite returned.  Sadly, it was the likes of Wendy's and Papa John's that brought it back.

We journeyed back to Presby Saturday morning for his follow-up MRI.  We're really hoping Dr. Gardner shows pictures to us on Tuesday afternoon.  We saw so many pre-op in Kansas City that we're really curious how his head looks now.

Afterwards, armed only with Google Maps on my iPhone to replace the native Maps app, I took myself on a tour of comic book stores in the Pittsburgh area.  Two of four on my list were no longer in existence; however, I got a nice little self-guided tour of downtown, an area we haven't explored at all since we've arrived.  Below is just a shot between buildings right off I-376 that goes along the west side of downtown:

You know, I keep forgetting that The Dark Knight Rises was filmed here.  I probably drove down some of the streets that were used and didn't realize it.  Here are a couple shots of those streets from the movie:

One particular building did catch my eye.  I don't know if it's the same one in the movie or not.  Now that I look, I'm guessing not.  I'm sure there's a website somewhere that would identify filming locations.  If I had thought about it, I could have planned a tour of film sites in Pittsburgh.  As it is now, I'm just too tired and want to get home.  I can't focus on such an adventurous project.

Here is a shot backwards toward the east entrance of the Ft. Pitt Tunnel.  It's the tunnel I mentioned the other day from The Perks of Being a Wallflower.  Exiting the west side, there's no sign of city.  But coming back, heading east, is a wonderful view of the city overlooking the river.

My biggest find yesterday was Eide's Entertainment, a three-level store near the bus station downtown.  Entering on the first level, you will find new comic books and music.  Downstairs, you will find a full-fledged comic shop with thousands of back issues and hundreds of toys and action figures.  Upstairs, you will find eveything related to movies: VHS, DVD, Blu-ray, books, posters, soundtracks and collectibles.  Of course, it was the last place I found, but it should go to the top of anyone's list.

Not much else to report.  Remember, no news about Michael is good news!

Coming "Home"

I drove to Presby this morning, anticipating that Michael would be discharged later in the day.  Although he was sleeping soundly, they had already taken him to have an ultrasound on his arm, which was a little swollen the day before.  It was nothing; no blood clots were found.  In fact, his arm was no longer swollen.

We were then told he would have blood work at noon, and if everything was OK, he would be discharged.  It was a long morning waiting.  But some lovely flowers arrived from Lockton, which put a smile on Michael's face.

As I look at his picture above, I realize this was the most energetic he's been all day.  He must still be exhausted.  He looks sad, but when we ask if he's OK, he says he's just tired.  And he still doesn't have much of an appetite.

Pre-discharge, we received a long list or prescriptions, half of which I later learned were simply over-the-counter.  We have medication for headaches, constipation and nausea and sprays for his nose and who knows what else?  I had to buy an AM/PM pill organizer to keep him on track!  (But I'm not kidding anyone... it was great fun to put all those pills in their little plastic compartments!)

He was eventually discharged about 3:30.  Not only did he have to share a room as if he were a commoner, we had to push him out the doors in a wheelchair ourselves, not a nurse or an aid.  (When he got out of ICO a couple weeks ago, they did it for us.)  And a woman had the nerve to tell me I shouldn't have pushed him through the revoloving door!  I sassed back, "I shouldn't have to be pushing him at all!"  Yeah, I'm pretty exhausted myself.

Mari Ann and I just enjoyed dinner at Family House served by its board of directors.  Michael picked at some macaroni and cheese and mashed potatoes.  And we just had a beautiful edible arrangement delivered from Andrew and Elizabeth (Brescia) Davis.  It's not a very good picture below, but I hesitate to unwrap it for fear of it immediately losing it's luster.  It will be soon, though, because I see chocolate-covered strawberries taunting us.

I have a feeling tomorrow will be a day of rest for all of us.  But it's wonderful to be "home" with nothing on the agenda until 9:00 Tuesday morning when we see Dr. Wang.  Since Michael's still recovering, I will plan to update every late afternoon or evening...

12-12-12: Lucky for Michael?

Short post tonight, keeping with the idea that no news is indeed good news.

First thing this morning, Michael had his "lines" removed and Physical Therapy took him for a walk up and down the hall, twice the distance as yesterday.  Before I could even get all my electronic devices set up for the day, he was tranferred from ICU to a "step down" room on the 8th floor.  Good news?  Yes.  However, this room is semi-private and his roommate is a poor man with horrible back pain.  He lies in his bed crying, moaning and groaning.  Bless his heart.

Approximately 11:00 AM

Luckily, Michael has headphones that plug into his television remote, so he does not hear him.  And I requested ear plugs for him when he goes to sleep tonight.  Speaking of sleep, Michael was awake more of the day today and seemed to feel well.  It's such a small room and very cramped.  Whenever Mari Ann and I sat down, we would have to get up so that a nurse or someone could get by.

Michael was very good about getting up, also.  He, with assistance, could get up to go to the bathroom.  And I walked up and down the hall with him twice.  He doesn't need any help, really, but his pre-operation dizziness seems to be gone, replaced by a little double-vision dizziness.  They want him to go slowly and they don't want him to cover either eye; however, he tore off down the hall anyway, pushing his IV ahead of him.  He's so eager to work through this temporary (we hope) side effect.

He doesn't have much appetite, but has taken a couple bites of anything they put in front of him.  I left him tonight with a banana that he can open for a late night snack if he wants it.  We watched Survivor before I had to leave to catch one of the final shuttles back to Family House.

9:00 EST

Our latest hopes for a timetable include being released tomorrow, having his nose packing removed on Tuesday and then being able to head home 48 hours afterwards.  That's a best case scenario according to Dr. Wang, who claimed Michael is doing better at this point than most people who have the same operation.  But Dr. Gardner hasn't budged on his statement that he needs to stay a full two weeks, which means celebrating Christmas in Pittsburgh.

All in all, everyone is pleased with how it's going.  It's my hope that we soon return to days with no blogs because we're back to sightseeing rather than hospital-sitting.

CORRECTION:  On Monday, I mistakenly wrote that PACU stood for Patient Anesthesiology Care Unit.  Lest you think I use this format to spread false information, I must correct that to say it stands for Post-Anesthesiology Care Unit. 

Tuesday

Trying out a couple things today. First, writing a little at a time to post at the end of the day. I'm too tired (more than yesterday) to do it all at once, if I even remember everything. Second, composing and posting entirely from an iPad app. Not sure how it will appear and hate risking it look different than every other post; ha, ha.

11:20

I arrived close to 9:00, but had to wait because Michael was soundly asleep and the nurse wanted to check him out. Ten minutes turned into 45 because Physical Therapy also paid a visit. When I finally saw him, he was sitting in a chair eating breakfast after going on a walk down the hall!

[Picture #1]

Apparently, Neurology also made early rounds. I don't think we missed Dr. Gardner, but Michael's nurse says he's doing great. His left eye does not move as quickly as his right, which seems strange because it's his right eye that looks just a little but "lazy". Already, he's showing signs that it will not be permanent.

ICU nurse just arrived. He doesn't really need to be here and is on the list of top three patients to be moved. If they need beds, he'll probably go to a regular room.

1:30

We missed Dr. Gardner while we crashed the UPMC holiday luncheon, but apparently no news. Instead, just the reminder that we have to watch for the 2% chance Michael might get meningitis (again, the less serious kind). The nurse gave us a printout (from their website) about the symptoms. They consist mostly of severe neck pain and fluid leaking from the nose.

5:10

Dr. Wang just checked-in. Everything looks good from his point of view. He did mention that his optic nerve was "really stretched thin" and they had to work 360 degrees around it. He said it was hard work. Again, Michael is aware of his double vision side effect and is already focused (pun intended) on doing what he can to move it along its way.

Most of the afternoon, Michael slept; however, when he was awake we had meaningful conversation. A couple folks from Neurology came by and said he would not be leaving ICU because they still wanted him constantly monitored. Blood pressure can sometimes be an issue.

I just asked his nurse if they ever discharge anyone directly from ICU. She said she's discharged only three people in eight months without first going to a different floor. It all depends. (Gosh, if I had a nickel for every time we've heard that!). She also warned that tomorrow, Michael will REALLY be walking, and won't be discharged until he does stairs.

Right now, Michael and his mom are watching the news. He's getting irritable about the picture-taking, but I keep telling him that people have commented how glad they are to see he's looking so good.

[Picture #2]

Monday Night in Presby

We got in to see Michael soon after we learned that his PACU status on the board was an acronym for Patient Anesthesiology Care Unit; in other words, the area he goes to recover.  We found him in the Neurosurgery ICU around 6:00, if I remember correctly.

He was still very groggy; three hours later he would not even remember he saw us.  But one of Dr. Gardner's team members came in and checked that he was "awake" and could follow simple instructions.  He could open his eyes, stick out his tongue, raise his arms and bend his knees.

Soon he started moaning about how much his head hurt, so he got some Tylenol with Codeine in his IV.  Although his temperature was very warm, the burning he mentioned was actually his catheter.  I was worried he might try to pull it out, but his nurse (Jen) later told me that would be next to impossible because there's a balloon in his bladder holding it in.

Again, he thought he was dying, but seemed to believe us the first time when we told him he wasn't.  He asked if they got all of the tumor and when we told him, "Yes", he said we could go eat dinner.  Oh, and of course he asked about Toby (our Golden Retriever).

I've just returned after dropping off Mari Ann at Family House and making a quick sandwich.  He's more alert, but still pretty out of it.  He asked me what I watched (on TV) tonight and went back and forth between real conversation and nonsense.

Apparently while we were gone, they did a CT scan and swallow test, if our patient is to be believed, and everything is fine.  He is aware of crossed eyes and I asked him how he knew.  He said he could tell when he looked with his right eye.  Indeed, he is a little cockeyed, but there is no indication at this time how long that will last.

He just woke up and asked me why I was still here.  A few minutes ago, I could tell he was trying to stay awake because I came back to see him.  But I told him just to sleep and I would sit here with him for a while.  I keep staring at him, so incredibly overwhelmed that he has gone through this.  It's miraculous for any human being and, considering the petty argument we had on Saturday, so much more meaningful that this human being is him.  It's a great way to put things into context.

Just wanted to get something posted tonight, but I'll stop before I get as delirious as Michael.  December 10 was a much longer day than November 28, but far less scary.

Midday Report from Pittsburgh

It was a surreal morning as we repeated the steps taken 13 days ago for Michael's operation.  Not much was different except we navigated to the hospital without a GPS and then, once we arrived, had to jump through fewer hoops.  Everything started 30 minutes earlier, but each step happened on a similar, eerily familiar schedule.  And while the roles were the same, some of the cast of characters was different.

Perhaps most important to note is that he had a new anesthesiologist.  Not that is was ever determined anesthesiology was the problem last time, but I know Michael was relieved that it wasn't the same person.  Gotta blame something.  I won't post the blow-by-blow timetable like before, but rest assured I prepared one if anyone asks.  Michael forbid another video message, but I did snap this picture as he was lying worried in pre-op.

I can't speak for how he really felt, only that he repeated how scared he was, but I can say that it was a different experience for me.  I felt more tired, with less andrenalin flowing, this time around.  Only when we reached a point further than the first attempt did I really begin to feel anxious.  As Mari Ann and I now sit in the waiting room a little longer than five hours after I last saw Michael, I can't focus on any one thing.  I need to be multi-tasking: playing Candy Crush Saga on my phone while watching a TV show on my iPad, for example.

When I stop to picture Michael in the operating room, head stabilized by screws that will later produce scabby bumps, and imagine the team of doctors performing their intricate duties, a wave of overwhelming... sadness... washes over me.  I'm not worried, necessarily, but I hate that he has to go through this.  I wish I could be there with him to take care of him.  I don't want him to be lonely or hurt or scared.  I think you may never love someone as much as you do when they're experiencing something like this.

8:00 am

9:30-ish am

About 9:30, we panicked when the liaison called, "Lendabarker", but it was only to tell us that the surgery started at 9:12.  At 11:45, we got a report that everything was going fine.  As relieved as we both were, I think we gulped when her following sentence was, "it's going to be a few more hours".  We'll get another report at 2:10 (if the surgery is not complete by then).

This might be a good time to say how much we appreciate all the kind words, thoughts, wishes and prayers.  If you're on Facebook or Twitter, you've been bombarded with a lot more than only this blog.  But we're not fishing for comments or responses.  That's what makes it so heartwarming when we get them anyway.  I'm not always good about doing it for other people, so I do not in the very least take it for granted.

I don't expect to write again until tonight, but remember: no news is good news...

Deja Vu

Last night was the THIRD Saturday night we've spent in Pittsburgh!  As our routine here becomes more familiar, our lives away from it feel like hazy memories.  Personally, I bottomed out on Thursday and Friday.  I felt persistent anxiety about being away from the house and the job and was physically ill on Thursday.  But I somehow got over the hump and felt pretty good yesterday.

Today, we find ourselves in the same situation we were in THIRTEEN (?) days ago, anticipating Michael's early, early check-in at Presby.  It's familiar, yet different.  It's both good and bad that we know what to expect.  It's good that we can remove some of the unknown from tomorrow's procedures, but it's bad because we know what happened last time.  Do we write that off and assume everything will be fine this time or do we worry that something will go wrong again?

It's early on Sunday, but Michael SEEMS a little less worried about it than he did last time.  Fatigue may have set in.  We all just want it to be over.  Mari Ann is doing well, I think.  Of the three of us, she seems to exhibit her anxities the least.  I know she has them, but she expresses them verbally and doesn't really alter her behavior.  Michael and I take it out on each other (and her).

I also tend to forget why we're here.  For so long, I played nursemaid and tended to Michael's previous recovery.  But since Tuesday when he returned to "normal", I've lost sight of why we came in the first place.  Then I am suddenly reminded of it.  When Michael tries to take a pill and chokes, spitting up water and stumbling, then falls on the bed, I think, "Oh, yeah... he still has that pesky tumor in his head."  I feel like I haven't been as compassionate toward him as I should be.  Not only does he have the pressure of the upcoming surgery, but he's really still recovering from the other one and remains tired and weak.

Sleep has been mostly good.  We're all getting our eight hours, at the least.  It's ironic that we can be as rested as we can be tonight, but nothing will prepare us for our 4:00 am wakeup call.  If it's like last time, though, it's oddly energizing for me when Michael is in the hospital.  Of course, I'm nervous and constantly wondering how it's going for him, but it also gives me a purpose for being here.  That's when I can be most useful, not feeling guilty for trying to pass time by going to movies and comic book shops.

Speaking of which, here's how we've been passing time since last I wrote...

I failed to mention Michael's birthday dinner Tuesday night.  A co-worker of his recommended an old college hangout called Essie's Original Hot Dog Shop.  The hot dogs were fair at best, but I've never seen a bigger basket of delicious french fries.  Not a very fancy birthday meal, but it's what Michael wanted.

On Wednesday, I guess we had to recover from the excitement because I don't recall that we stepped foot outside of Family House.  This may have been one of the nights that volunteers prepared dinner for the residents.  Or it may have been the evening of the tree trimming party.  All I know is that as soon as Mari Ann stocked our groceries, someone else began preparing our meals.  If you've ever wondered what it must be like to live in a nursing home, with communal dining and "special activities", I can tell you all about it.  Mostly, it's just humbling to be on the other end of charity for once.

On Thursday afternoon, we ventured back to the Waterfront area for a movie and a little shopping.  I saw Wreck-It Ralph and Michael and his mother saw The Perks of Being a Wallflower, which I had already seen in Kansas City.  I expected a little more from an animated movie that actually caused my brother to cry at the end; however, this was the day I was ill, so it didn't have the same effect on me.  And it reminded me that the novelty of beautifully-animated movies may have worn off.  To me, they now seem to be a genre among themselves, not just because of the kind of movie, but because of the characters, the stories and the "patterns" within them.  They're all starting to feel the same.

On Friday afternoon, I explored Steel City Con in Monroeville, only 15 miles away, but nearly an hour's drive with rain, accidents on the highway and getting just a little bit lost.  For those of you in Kansas City, this was very much like our annual Planet Comic Con; however, it was lighter on comic books and heavier on toys, new and "used".  I love their tagline, "The Pittsburgh Toy, Comic and Childhood Collectibles Show".  Being closer to the East Coast, I feel like there were toys here that I never knew existed.  There were certainly non-sports trading cards that I never knew existed.  Unfortunately, while I have access to my online comic book inventory via iDevices, I have no such way to check my trading cards or monster magazines.  Since I cannot trust myself to not invest in something I already have, I spent only $10 on a DVD, a documentary about Britain's Amicus Films.

The convention was next door to the Monroeville Mall, where George Romero's classic Dawn of the Dead was filmed.  I wanted to take a peek, but I overheard there was a zombie museum inside, so I parked and went inside.  Hidden in the back of the mall's arcade, the museum had just closed for a bit, so I did not get to enter.  I wasn't too disappointed because behind the gate looked more like mini-golf than museum, although there are some cool pictures online.  I snapped some pics of the mall, but haven't seen the movie in so long, I don't know if they're familiar.  I will say there's something eerie about it.  Imagining it in the 70s, with it's rectangular layout and evenly spaced escalators, it's frightening, even without zombies.

Dawn of the Dead-1978 (left) vs. 12-7-12 (right)

Dawn of the Dead-1978 (left) vs. 12-7-12 (right) 

Yesterday, Michael and I headed the other direction (west) for an exhausting excursion to IKEA.  Normally a pleasure to meander through, we ate too many Swedish meatballs ahead of time and quickly grew tired.  We got some kitchen ideas, but the only other thing we got was frustrated.  Cutting our trip short, we returned to Family House to rest.  Then, while Mari Ann went to church at 6:00, Michael and I finally investigated the neighborhood video bar.  It was very nice, reminding us how pitiful the bars in Kansas City are.  It's our own fault; the community doesn't seem to support a nice bar.  The closest thing to this would be Bistro 303, but 5801 Video Bar & Cafe was probably three times the size and much more comfortable for relaxing and having a cocktail.  Which, of course, we did not, because of Michael's pre-op ban on alcohol and my solidarity for his condition.

We then picked up a pizza and returned "home" for a rousing game of Uno, where "sore loser" Michael ultimately beat me and Mari Ann by nearly double our points.  (By the way, Chicago needn't fear a culinary threat from Pittsburgh; the 16" Sicilian was all right for a pizza made by Middle Easterners, but we were happy to place our leftovers in the common area of the kitchen for others to enjoy.

Talk about new routines, today is laundry day!  Gonna do a couple loads then head out for one more movie before we're incapacitated for the upcoming week.  Probably Anna Karenina.  Mari Ann really wants to see it, but I'll have to tell Michael that Aaron Johnson is in it to squeeze any interest out of him.  (He's a new favorite actor of mine.  He's been mesmerizing to me in Nowhere Boy, Kick-Ass and Chatroom.)

As a perfect way to tie all this together, on our way to IKEA yesterday, we passed through a long tunnel out of Pittsburgh and into the 'burbs.  Michael mentioned ladies at his movie on Thursday talking about a tunnel used in The Perks of Being a Wallflower for a scene where the characters drove through, one of them standing up in the back of a pickup.  He knew, but I somehow only then realized/remembered, that it was filmed in Pittsburgh.  So now we have Dawn of the Dead and The Perks of Being a Wallflower filmed here, as well as the U.S. version of Queer as Folk and who knows what else.  I don't know how I missed the opportunity, but perhaps I need to do some more research and go on a "movie tour" of Pittsburgh.  We'll see how Michael recovers.  As much fun as that would be, I'd gladly sacrifice it for some marching orders to return home...