Catching Up in Pittsburgh

It seems like it's been a while.  I'd like to say that our days have been so action-packed that there hasn't been time to write; however, that's not the case.  Our days are dragging and we're going a little stir crazy.  Oh, I guess that's not entirely true.  As I recap, we have done a few things here and there to help time pass.  It's just that we're really missing home right now, especially Toby and Cosmo.  And the longest stretch begins today…

We confirmed yesterday that Dr. Gardner and company are going to attempt the surgery again first thing Monday morning.  Same time, same place, less paperwork.  By my count, that's five full days to wait… too short a time to go back home, too long a time to have it pass quickly.  I'm able to keep busy; all I need is my iPad and a wireless connection (which is not necessarily a given at Family House).  And I think Mari Ann can relax fairly easily.  It's our patient who gets restless and impatient… understandably so.

But that's the future and, even though I just woke up at 4:30 EST with my mind racing, I try not to worry too much.  Let me recap what's been going on the last four days.  I'll start with Michael's appointments yesterday so that if you're not interested in the non-medical "fluff", you can stop reading.

We first met with Dr. Wang, the ENT surgeon, at 2:00 yesterday afternoon.  He was quite candid about what happened during the operation last week.  He called Michael's ordeal, "abnormal" and claimed he was quite the topic of conversation in "the halls" all day long.  He even went as far to say that they have changed their protocol based on Michael's experience!  Apparently, at least part of the delay during the 2:45 time period between pre-op and the start of surgery was because the anesthesiologist could not get Michael fully to sleep.  He was poked and prodded, all the time lying exposed and freezing on a gurney.  Because of this, they are now going to use heated blankets on the tables for their surgery patients.

After what we thought was going to be a few minutes of social chit-chat, Dr. Wang did remove the packing from Michael's nose.  I watched the feed from the scope on a monitor behind his chair and the tiny, rubber-covered plug looked as big as a whale.  It seemed to come out easily and Michael felt little discomfort.  No more gauze moustache!  In fact, for all intents and purposes, Michael is at this point "back to normal":  no more antibiotics and no more nasal sprays, but, more importantly, he can now take a shower!

Dr. Wang runs a very efficient office: in and out right on time (and that fits his somewhat… "prissy" personality).  However, Dr. Gardner more than makes up for it with time spent in the waiting room.  Both tired of playing games on our phones, Michael and I resorted to watching Judge Judy during our two-hour wait.  At about 5:30, we got in for our 3:30 appointment.  And we didn't even see Dr. Gardner!  That was not an issue, though, because he had told us he didn't really need to see Michael.  We didn't cancel the appointment, though, because we had wanted to at least touch base with him.

We did get to see one of Dr. Gardner's fellows, Dr. Fernandez-Miranda and the woman with all the power, Juliana Kovac, the "Nurse Coordinator".  The brief time with the fellow was pointless on our end; Michael does still know his name and why he's seeing the doctor.  But we seized the opportunity to ask Dr. Fernandez-Miranda a couple of important questions.  First, they are not approaching the operation any differently than they did the first time.  All of Michael's "notes" are in the system and it seems they'll refer to those to make any adjustments along the way.  With the clearance of Cardiology, they express no additional concerns.

Second, most patients are fully able to travel within a couple weeks of their operations, whether by land, air and sea.  I had asked in reference to the cruise we are hoping to take for my birthday a mere two months after Michael's surgery.  We don't know how he will take to his recovery or what lingering side effect he may experience, so we're getting leery about actually going on the cruise.  Unfortunately, the doctors can't really discourage us at this point.  (It would almost be easier for us if they would say, "No way.")

Dr. Fernandez-Miranda did share some potentially discouraging news: he said that we should plan to be here a full two weeks following the operation.  Pull out your calendars… two weeks after the operation is Christmas Eve!  And I bet no doctors will be in their offices for follow-ups that week.  Thankfully, Juliana spoke more realistically with us and said if all goes well and we can get in on the 18th for a follow-up, we should be able to go home that week.  Dare we start humming "I'll Be Home for Christmas"?!?  We're halfway there, because we already scheduled Michael's follow-up with Dr. Wang at 9:00 the morning of the 18th, early enough to head out that day, if possible.

I'll miss my duties as nursemaid to Michael the next five days.  I've gotten quite adept at cleaning/bandaging his nose and washing his hair in the bathtub without getting his face wet.  But hopefully we'll make up for it with some activities such as those we found the last three days…

On Saturday, we went to the Manor Theater in an area called "Squirrel Hill" to see Silver Linings Playbook.  I knew virtually nothing about it except that the critics, my brother and my dear friend Greg all loved it.  It took me a while to warm to it; I didn't "get it" for most of the movie.  But somewhere along the way, everything cumulated into a wonderful result.  We all thought it was great.

On Sunday, I took a "me" day and returned to the AMC Lowe's Waterfront to mark another movie off my list, Breaking Dawn Part 2.  I know, I know… but I've seen all the other Twilight movies, so I had to see this one.  Had Michael or Mari Ann joined me, we would have seen something else.  I had heard that they saved the best for last and this final movie in the series was actually pretty good.  I heard wrong; it's the same old crap, although Kristen Stewart does show more life as a vampire than she does as a lovestruck high school student.  I will admit the final battle is somewhat spectacular; however, it ultimately carries no consequence.

On Monday, temperatures had continued to rise to an unseasonal, but lovely, 66 degrees, so Michael and I checked out the Pittsburgh Zoo and PPG Aquarium.  Michael thought it was more rundown than I did, but there were truly a couple of leaks in the glass walls of the aquarium where towels had been laid.  Although it was warm, it was a dreary day and most of the animals, especially the entire population of the monkey house, were napping.  We got some good pics, though, and the large animals reminded us of Toby, while their children reminded us of Cosmo.

Lions, tigers, no bears... oh, my!

Birds of a feather?

Fun with pictures: create your own captions!

Outside the aquarium.

Extremely tall, oddly-angled escalator.

Yesterday was Michael's birthday.  Although most of it was spent at the hospital, I did treat him to a mani-pedi beforehand and we gave him a few small gifts last night and had cake.  That stranger you see in the final picture is none other than your author, stepping out from behind the camera for the first time this trip.  That's the problem with managing the media events; you're always writing and photographing, but barely participating.

I'm not sure when the media coverage will begin again in full, but there's likely to be one or two updates before the full court press begins again Monday morning…

Into the Wild

Look who has been released into the wild:

Michael was discharged from the hospital around 11:00 this morning and joined his mother and I back at Family House Shadyside.  He's alert and thrilled to be out of bed.  He's a little self-conscious about the bandage, but his nose continues to drip blood.  We learned it is indeed somewhat packed way on up there.  The "wire" taped to his cheek must be the way they will eventually remove the packing, not some remnants of the failed surgery which will give them a head start next time.

Speaking of "next time", we still don't know when that will be.  His next appointment with Dr. Gardner is Tuesday afternoon at 3:30.  I've communicated with Juliana, the woman who schedules his surgeries, to express our hopes that everyone can reconvene by the end of the week to finish what they started.  That was Dr. Gardner's "best case" scenario, but we have no idea if logistics will allow it.  (If not, I suppose we'll have to entertain returning home until it's rescheduled.)

For those who missed it, Michael was cleared by the cardiologists last night.  There is nothing wrong with his heart.  Enzymes were good, EKGs were normal and stress test worked out fine.  If anything, we've learned as a bonus that he's extremely healthy as far as that goes.  The irregularities during surgery must have been a spasm, perhaps caused by the anesthesia.  Michael says this incident has sworn him off smoking forever.  (If he's ever tempted, I've got some great pictures to remind him of his extra ordeal!)

So, we have three days in Pittsburgh to relax and recoup.  While not as bad as the hospital, it would still be easy to go stir crazy at Family House, so I hope he'll feel like getting out and doing something.  The weather is supposed to push 60 this weekend!  But, oh, how he misses Toby and Cosmo.  Don texted a picture of Toby Wednesday night, but he'll probably need to send more.

I may (or may not) post anything this weekend.  If so, the blog will shift into travelogue mode, unless there's any news about Michael.  Feel free to check back, but I think mostly we'll be enjoying a brief reprieve from the excitement of the week...

Well, That Was Not Expected

When last I wrote, Mari Ann and I had established camp in a nice, semi-private area of the Surgical Family Lounge by 8:00-ish.  The status board for Michael (Patient #18791) read, "In OR":

Two hours later, the status board read the same thing.  I asked our liaison if it was current and he called the OR to learn that Michael was just then being "draped and prepped" for surgery.  We believe the surgery did not actually begin until 10:45.  After that, the board read, "Surgery Started":

I got busy on my "projects" and Mari Ann played Solitaire on her iPad.  At noon, we were called into a conference room to talk with Dr. Gardner.  "Wow," we thought, "he's done already!"  The last thing we expected were these words to come out of his mouth, "We've stopped the operation.  His heart was showing signs of strain."

After bits and pieces of news all day long, we were able to piece together what happened.  Apparently, the anesthesiologist left the operating room once the surgery commenced and his student noticed irregularities with Michael's heart.  Cardiology was alerted and from that point on, he became their patient.  We think he was never in any danger; they stopped before it got to that point.  However, they could not be sure he didn't have a heart attack.

So this became his status around 12:50, "To ICU":

After waiting in the tinier, less private, ICU waiting room, we got in to see Michael around 2:00.  Bless his heart, he was still groggy from the anesthesia, but he thought he was dying.  He said he woke up to "chaos".  But he was only concerned for us and said he didn't want anyone to fly in.  At 2:50, we saw the ICU doctor, who added some details to the basics Dr. Gardner told us at noon.

Settled safely in ICU, Mari Ann and I ran to grab something to eat in the cafeteria.  When we returned, Michael's head was clear and he sounded a lot like his old, perhaps a little less sweet, self.  His nose was draining blood and he complained of congestion, but that was relieved when he finally coughed up a blob of bloody goo.  He drifted in and out of sleep.

At 5:45, we learned that a trauma patient needed his room in ICU, so he was moved to Neurology ICU.  We met up with him there just before 6:30, at which time we had to vacate ICU for two hours.  (No visitors between both 6:30 and 8:30 am and pm.)  Luckily, though, by this time we had met the cardiologists and saw Dr. Gardner once again.

The primary concern for the 24 hours following the attempt at surgery was to watch Michael's heart and learn whether or not he had a heart attack.  The cardiologist and Dr. Gardner were hesitant to guess what would happen once that was determined; however, Dr. Gardner did say that the POSSIBLE best case scenario would be that Cardiology releases him today (Friday) and the operation is re-scheduled for... next week.  (Earlier, he suggested it might be a go back home, return in six months kind of thing.)

Michael is very disappointed that he still has the little friend in his head; however, he has not wavered in his desire to complete the operation.  His biggest problem in ICU has been that it's so darned cold and he could not eat or drink after midnight because of the tests being performed on Friday.  He'll hate me for posting this, but it's for you all to see that, except for his white gauze mustache, he is honestly doing fine:

What we know today is that at around 11:00, Michael's stress test began when he was injected with the tracing material.  At 12:30, he will be taken for photos, then will be given a drug to expand his arteries, after which they will take more pictures.  If there's any sign of heart damage or disease, the arteries will not expand.  There is no indication that he won't pass the stress test; his enzymes are "fine" and his overnight EKG was "completely normal".

They are doing this kind of stress test... a "chemical" stress test because we're not sure Michael could maintain his balance for the duration of the standard treadmill stress test.  We laughed; it's the lazy man's stress test.  Results will arrive within 30 minutes following the entire 3-4 hour process, but that doesn't mean we'll learn the results within 30 minutes.  If Cardiology releases him, we'll meet with Dr. Gardner and decide what happens next.

Anything else at this point would be speculation.  That's typical of this entire ordeal... we've never quite been able to answer the questions that everyone wants to know.  Although I'm sorry I can't satisfy the curiosity of those concerned, I am not too concerned myself.  If it's baby steps, that's fine with me... as long as with each one of those steps, Michael is still here with us.

Post Pre-Op Report

This one will be for hard-core followers only.  Michael said people don't need to know every little detail, but for me, this is a good way to document everything.  If you're bored, you can look at the pictures and move on.  (However, there's a surprise at the end!)

To say I woke up at 3:30 this morning would be to suggest that I actually slept last night.  It's more accurate to say that I opened my eyes at 3:30 this morning to see how close to 4:00 it was.  I drove us to Presby today since the shuttle doesn't run that early.  Michael was quickly registered and admitted.  Mari Ann and I had barely set down our things in the Surgical Family Lounge when they were ready for him in pre-op.  I got to go with him for the confusing parade of doctors, nurses and technicians who saw him for their singular purposes.

• 5:27  Surgical Family Lounge
• 5:35  Pre-Op (fashionable open-back gown replaced jeans and t-shirt)
• 6:08  Donna (nurse) completed vitals.
• 6:11  Dr. Caldwell (anesthesiologist) introduced himself.
• 6:19  Tom (?) asked about blood work; yesterday, Michael's platelets were apparently a "smidge" low.
• 6:21  Dr. Monaco (works w/Dr. Gardner) introduced himself.
• 6:55  Dr. Gardner stopped by and signed-off; mentioned Michael will probably be in ICU only overnight.
• 7:07  Dr. Caldwell visited again; had to go look for his anesthesiology consent form.
• 7:11  Susan (?) attached IVs.
• 7:20  Christine (nurse) came by to make sure everything was signed. 
• 7:22  ??? returned with blood test results; platelets are still "on the low side"  (That just means they'll be prepared to give them if needed during the operation.)
• 7:42  Yvonne (anesthesiology student) asked Michael the same questions everyone else had asked.
• 7:46  Emily, who will be Michael's nurse during the operation introduced herself (really sweet; was able to calm Michael's nerves a bit).
• 7:50  Michael was rolled away from me and I found my way back to the lounge.

And here we sit.  If you've gotten this far, our phones are off in the lounge, but we have great wi-fi, so we'll communicate by email, Facebook and blog.  Now's the time for those prayers and good thoughts, of which there have already been many, and for which we are so grateful...

And now, your surprise!  Undoubtedly perturbed by my all-out media coverage of his operation,  I nevertheless convinced Michael to record a brief message for everyone who's been thinking and reading about him.

Finally Some Information

For the first time on this trip, we had to set the alarm so we could wake up to catch the 7:36 shuttle to Presby.  It was another hour-early arrival to an appointment; however, getting in early to see a doctor would remain a distant memory from the day before becuase we didn't meet Dr. Gardner until 11:28.  As we would learn, it's in-and-out for testing, but if you want to talk to someone who actually knows something, time is more elastic.

 

First impression?  SO YOUNG!  Nothing makes you feel older than to know a "kid" is a frickin' brain surgeon!  But I guess we all reach a point where instead of looking up to our elders, we have to trust our children.  And he's so good-looking, like a blonde Clark Kent.  Even his partner, Dr. Fernandez-Miranda, from Spain, was very attractive.  I trust their expertise in the operating room goes beyond their pleasing appearances.

 

So, here are the deets:

• Check-in at 5:30 am
• Operation at 7:55
• Operation could last 2-6 hours
• He'll be in ICU for probably 2 days
• Probably will be here 7-10 days after tomorrow
• His nose will be "packed" for healing for at least 3 weeks (he'll have it removed in KC)

Details of the operation are pretty much what we already expected, except we learned that an ear, nose and throat guy will be assisting.  He actually opens the sinus so Dr. Gardner can get in.   He also removes a bit of the skin inside Michael's nose to cover the entry point afterwards.

 

Dr. Gardner was curious about a new raspiness in Michael's voice, so he sent him to see Dr. Wang (pronounced Wong).  Apparently, a symptom of this tumor is that one side of the vocal chords may become paralyzed, affecting speech.  We got right in to see him; didn't even have time to complete yet another sack of paperwork.  But we learned there is nothing wrong with Michael's vocal chords.  However, the nose scope revealed a polyp which Dr. Wang is "going to take care of".

 

Of course, it's obligatory for the doctor(s) to remind us of the risks.  Although there may be many, the likelihood of any of them really happening is minimal.  Most possible would be some spinal leakage as some of the flakes of skin from his tumor enter the bloodstream.  He would recognize this in the form of meningitis, albeit an easily-treatable version of it.  We'll have to watch for dripping from the nose or back of the throat and severe headaches, which might not appear for several weeks.

To summarize what will be happening inside Michael's head after the opeartion, let's use Dr. Gardner's analogy that the base of Michael's brain is like a sponge with an orange resting on it.  When the orange is removed, the sponge expands.  This is what will happen in his head.  Everything that has been compressed will spread out to fill the space.  I don't know how long it will take to happen, but Dr. Gardner said it will begin happening immediately.

 

At several points today, Michael was exasperated, saying that he just wanted it to be over.  But he seems to me to be in a better mood today than he was yesterday.  We'll all be glad when it's over.  And that will come soon enough...

No Liquor in Pennsylvania Homeland

Michael often begrudgingly watches my TV shows with me, but there are a couple he truly enjoys.  Homeland is one of those.  And his mother shares our enthusiasm for it, as well.  So I wish someone had been here to take a picture of the three of us huddled around my iPad as we watched it tonight!

It felt really good to relax and, since it is such an engrossing show, I think it took Michael's mind off the operation for almost an hour.  He thinks about his procedure constantly and should Mari Ann or I shift our focus, he reminds us that we are here for him... we're not on vacation.  I can't imagine what's happening in his head, both literally and figuratively.  I've just been trying to distract him from it whenever I can.

We stepped foot in our first hospital today: Presby (short for Presbyterian).  A shuttle runs every hour between Family House Shadyside and the hospitals.  Although it was only a 15-minute ride, we opted to go an hour early so we could get acclamated once we arrived.  They seem to do things differently here: since we arrived early, Michael got in early for both his CT scan and MRI.  Of course, we don't know anything else yet; we finally meet the doctor (we hope) tomorrow.

Tonight, we took Mari Ann to a yarn shop, then picked up a couple things at the liquor store, the grocery store and Target.  Funny story... at Costco yesterday, I asked if they had beer and wine.  The worker looked at me like I was insane and said, "No, this is Pennsylvania."  He must have then noticed my Jayhawks sweatshirt and realized I wasn't in Kansas anymore, because he suddenly became very nice trying to direct me somewhere, even though he warned me that it was a Sunday.

We all have things that make us happy.  We got back tonight and I had my Diet Cherry Dr. Pepper, Mari Ann had her Hershey Kisses, and Michael had his Candy Cane Oreos.

Here are some more pictures of Family House, exterior shots this time.  And about a block away, between here and Wendy's, is a nice little... plaza, courtyard, park-thingie with a monument to WWII veterans from this area... "ward", I think it read.  And Michael said not to post it, but of course that means I had to include a pic of his arm prior to his two tests today.

A Visual Tour of Family House Shadyside

Here are some pictures of the common areas of Family House Shadyside.  As I write this, we're sitting in one of them preparing to watch The Amazing Race and The Walking Dead.

Today, I dropped-off Mari Ann and Michael at St. Paul's Catholic Church and found my religion at the comic book shop two blocks away and a shop called House of the Dead that sold nothing but merchandise with zombies... t-shirts, posters, books, etc.

Afterwards, we made it just under the wire to see Life of Pi.  (Tip: be precise when entering addresses into the GPS.  Riverfront is not the same as Riverfront West.)  What a lovely movie that was!  It started slow, but from the ship sinking onward, it was pretty amazing.  I caught hints about the ending being controversial, but have no idea why.  If it's because we get to choose which of two stories is true, so what?  (For the record, I'll always believe the more fantastic one.)

The theater was near a Costco, so we picked up a few things and I made our first dinner at Family House: lasagna and cream cheese biscuits.  And that was our day; exciting, huh?