Zachary James

Zachary James

Wednesday, September 26, 2012

Pancakes and Small Acts of Kindness

It's rush hour, you are late...maybe you are on your way to work...maybe you just chose a really bad time to schedule a doctor's appointment but whatever it may be, you ended up here...stuck.  And to top it off, the lady next to you has her blinker on and thinks she's actually going to 'cut' in front of you!!  Consider for just one second that maybe this woman reaaallllyyy needs to get over - who knows what is going on with her day. are at a fork in the road.  The fact is you are probably not the only one with issues And IF you let this lady will never know how much it affected her life.  But you can go on about your day feeling like a good person.  Just a simple act of kindness can change someone's entire well as the lack of.

Staying at the Ronald McDonald House really had a profound affect on me.  As much as I gloss over it...being alone with a two-year old is tough.  Not just because two year-olds are A LOT of work but because you can't exactly carry on a conversation with one.  Though I can appreciate having many 2 minute talks with Zac about cars, trains or Bubble Guppies and he makes a darn good shopping partner ("Oh mommy, those shoes are cute..."), it is not the same as having a supportive adult with you.  A phone call is nice, but it doesn't take the place of a face-to-face conversation.  

The first night we spent at RMH after surgery was rough.  Even if Zac wasn't waking up on his own, I had to wake him every 4 hours or so to ensure I stayed on top of the pain medication.  In order to get him to take his medication, I had to resort to giving him 'jam beans'...what you and I know as jelly beans...   Sometimes the pain was so overwhelming that he would hit at his face and scream.  This particular night, I had a hard time getting him settled down despite trying a few different things.  Out of desperation, I asked him if he wanted to get in his stroller and he said yes.  I put the seat all the way back (a feature I had specifically chosen when making a Chicago-trip stroller purchase) and laid him inside, covered him with his favorite Elmo blanket - handed down by his sissy and slowly pushed the stroller back and forth until he fell asleep.  Though he slept restless, he slept rather soundly in his stroller from 2:30 a.m. until he woke up at 8:30 a.m.  

All in all, it was a very rough night.  I got dressed and changed Zac's clothes and diaper (which was no small feat thanks to the port in his hip/leg for the front expander - oh how I absolutely dreaded diaper changes this trip),I  pulled the blue jelly bean out of his hair from the previous night's medication bribery and I walked downstairs looking to find a bagel and some cream cheese donated by one of many amazing groups that volunteer their time and cooking skills and instead walked into something that would change my day.  A man greeted us right away.  He squatted down to talk to Zac, who was eating a bag of Goldfish crackers and something magical happened....Zac smiled!  To be honest, Zac smiles A LOT...really.  He is the sweetest little guy, but something about this first smile after such a long night.  A smile that I was unable to muster up all morning, bright and glowing and then came the small giggles. 
Care Bear pancakes!

It brought me to tears, really.  I do not cry easily but there was something about this moment that made me feel...I don't even know...relief, tenderness.  I shed a tear or so and then was quick to dry them away as I didn't want to be seen by anyone. ;)  I was so touched by the kindness of these strangers and suddenly the simple yogurt I choose to eat from their vast feast was a little more special because it was given with such kindness.  We choose a seat in the huge RMH dining room and that is where my day began to change.  One of the volunteers came over and sat at our table and we started to talk.  We talked about nothing in fact, I can sparsely remember what we talked about.  I only know that during our talk, all I could think about was how nice it was to have some 'adult' company.  How the kindness of these strangers -in particular the one that gave me the best gift ever, the one thing I didn't even know I really needed, the gift of conversation...friendship - brightened my whole day!!  I have no idea if this man even knew how much he changed my day...

So, in the words of one of my mentors...go change someone's world today.  It may be done with something as simple as a kind word or even a smile.  You may not realize you did it...but someone else will be glad you did.  "A new command I give you:  Love one another.  As I have loved you, so you must love one another.  By this everyone will know that you are my disciples if you love one another." John 13: 34-35  

Sunday, September 23, 2012

Lucky Number 7

Captain Happy!

Have you ever wondered why the number 7 is considered lucky?  Seven has always been my favorite number.  There are 7 days in a week, 7 notes on a musical scale, we have 7 holes in our head...and I cannot believe it, but Zac just had his 7th surgery!!!  As I sat in the airport, travel mother extraordinaire with my condensed new under the seat carry-on and and rolling carseat bag with Zac attached to his favorite monkey  leash...uh, er...backpack I thought to myself, "How did I get here?"  How did I all of the sudden go from novice tissue expanding mother to 'ask me anything about tissue expansion,  melanocytic nevus and/or the city of Chicago.'  And now that I am no longer a novice...what does that make me?  An expert?  Surely not.  The one thing I know for sure is that no two rounds of expansion are EVER a like and you can take that to the bank, therefore, you can never call yourself an expert.

When people ask me how I can be so calm before a surgery, I tell them one thing.  I simply try really, really hard not to think about it until I actually have to pack my bag to leave (which is usually a day or two before). Gone are the days when I used careful preparation in my packing.  Now, I keep the important things packed in the same place such as pain medication and seasonal clothing.  This time, I was forced to think about our adventure a little earlier when Zac developed an infection in two of the 7 holes in his head (that would be his ears...).  So, I will admit, I was very stressed out trying to keep him well.  After all, the only thing worse than traveling to Chicago for your 2 y/o son's major surgery is making all the plans to go....scheduling the surgery, the plane tickets, rental car and accommodations only to have to cancel everything.  Lucky for us...Zac's ear infection healed up very nicely and on September 12th...we were on our way to Chicago for surgery number 7 and the beginning of round four of tissue expansion.  Yep...just me and Zac.  The plan this time, THREE expanders and an excision of a satellite on the back of his thigh about 1.5" in diameter.
Having some breakfast at the airport

Our luck began as we got out of the car at the airport only to notice that my little car seat wheelie thing was missing a strap!!  Lucky for me...I had found a car seat bag with wheels on major clearance at Target a few weeks prior, so after a small rearrangement, we were ready to go.  With plenty of time to spare, Zac and I had a super nutritious breakfast at the airport Starbucks.  Zac was loving running around at the airport on his leash...uh, er...monkey backpack.  We arrived in Chicago, got our bags and our rental car.  This time though, Zac an I were in for a new adventure.  We were staying at the Ronald McDonald House near Lurie's Children's Hospital in downtown Chicago!  I got out my Google Map and off we went.  
Waiting for our luggage

To be able to stay at the Ronald McDonald House was very lucky indeed.  In order to stay at a RMH, you have to meet certain criteria, you also have to call no more than 24 hours in advance to see if they have room availability for you.  Thus the reason we've never stayed there before.  It is stressful enough to do all the planning without leaving your accommodations so up in the air.  There is also the fact that RMH is in downtown Chicago....Highland Park Hospital and Dr. Bauer's office is a good drive into the suburbs from any RMH.  But if you know me....I love change and trying new things and this, my friends, was a welcome change.  The toughest part about RMH was having to find the house, drop off your luggage, park your car 4 blocks away in the hospital parking garage and walk back to the house.  But, the weather was beautiful and I wasn't afraid of a nice little walk.
Top floor view of RMH
Occupied by the iPad before surgery

Zac's surgery was scheduled for 9:30 a.m. on Thursday, Sept. 13th which meant we needed to be there by 8 a.m.  I was ecstatic not to have to deal with an afternoon surgery and was hoping it would be easier on Zac than the last surgery I attempted by myself.  Then it know those days when EVERYTHING goes wrong??  This was NOT one of those days!  Is it possible for the day of surgery to be...lucky?  We left the RMH at 6 a.m. to arrive in Highland Park by 8 a.m.  Yes, you read that right.  Remember...I had to get to the hospital parking garage (which they also have a shuttle to) and get my car, then there is that little problem of rush hour traffic...yes, even though we were headed away from Chicago.  I hooked the iPad up to the back of the car seat for Zac and I was relieved that my Google instructions took me right to the freeway without a problem.  Lots of stop and go traffic later (mostly stop and not go) and 3 episodes of Bubble Guppies and we arrived at the hospital with 15 minutes to spare.
Loving the playroom at RMH

At the hospital, we followed the same drill as always...check in at the desk...take elevator 6 to the 2nd floor and head to the surgery waiting room for a vital sign check.  The anesthesiologist comes in to check on Zac, introduce himself and ask a bunch of questions, a short check in with Dr. Bauer and then we wait...  After several trips around the hallway in the wagon and a few games on the iPad, it was time to take a walk down the next hallway and wait to be taken in to surgery.  There we see a sea of familiar faces, including Oni, our favorite recovery nurse.  Zac is taken back to surgery in the arms of one of the fantastic nurses, wrapped in a  warm blanket with his favorite car, a Tow Mater that talks.  And I can't help but cry...yep.  Even with six other surgeries under my belt, this part gets me every time.   

Oni came out to talk to me and gave me a coupon for the cafeteria and told me to get something to eat.  I was dreading the average hospital food when I walked into the cafeteria but wouldn't you know they have a specialty chef on-site making crepes!!!  ARE YOU KIDDING ME?  Crepes!  YUM!!!  I looked up and just said a hallelujah and thank you to God for giving me such a lucky day!  Though, I know it wasn't really luck as much as it was the Lord.  This was a day when the small blessings were magnified greatly.

I was expecting about 1 1/2 hours for surgery.  Dr. B came out and gave the the lowdown on the expanders...a 250cc expander in the shoulder with 60cc so far and two 750cc expanders - one in the front with 90cc and one in the back with 80cc.  A mostly full excision of the satellite on the back of the right thigh. Dr. B recommends staying overnight in the hospital for 'pain management'...ugh.  So, I headed back to recovery to hold my little guy.  Once we got to our room, Zac presented a pretty decent little appetite feasting on goldfish crackers.  He even ate a fair dinner.  We got through the night quite well despite the normal interruptions.  When Zac woke up at 5 a.m. and asked for 'some turkey' I knew we were going to be ok.  

Couldn't resist this shirt w. attached cape

After falling back to sleep, we woke up to a visiting Dr. B.  As Dr. B looked under Zac's bandages, Zac looked up at him and said, "I brought my cars...and my my backpack."  I know this completely melted Dr. B's heart because when we visited Mim at the office later that afternoon, she had already heard the story.  The recovery was not fun, I am not going to lie.  The older the kids get, the rougher it is on them.  Despite doing all I could to manage Zac's pain, he didn't want anything to do with getting out of bed or out of the stroller for days.  Changing diapers was especially difficult due to a port placed in his hip to the front expander.  Everytime I had to bend Zac's leg in the slightest he would scream and of those cries that had him partly holding his breath.  We spent a lot of time in the stroller post-op.  It was great to be downtown as there were plenty of places to walk to and check out while Zac chilled in his stroller.

Though God created the Heavens and the Earth in 7 is going to take a few more surgeries to finish what we have started here.  But as for the 7th will go down in my book as lucky #7!

Wednesday, September 5, 2012

Back to Business...

I know I haven't written in so long that most of you have been longing for an update...  Truth is, when we are resting from expansion, I just don't want to think about it much.  I am not inspired to write anything amazing and wise because I am off enjoying our normal life without thinking about germs, drains, fills and pretty new skin.  It's been a great four months and a very nice break but next week we are back to Chicago for our 4th Round of tissue expansion!

Seems like just yesterday I was getting ready for the first trip to Chicago, knowing in my heart I was making the right decision for my son yet still scared to death.  Putting on a brave face for my daughter so that she wouldn't worry and leaning on my husband for comfort.  Now however, I am one of the 'experienced' mamas!  I have tips and suggestions and trial & error advice galore which I am looking so forward to sharing with you in the weeks to come.

Right now, we need some prayers.  One week from tonight, I will be sitting in a hotel room at this time, probably unable to sleep...maybe even writing on this blog....  Dreading taking Zac into surgery by myself in the morning.  What could be worse??  The whole surgery being cancelled due to an ear infection dagummit!  So much planning goes into laying out the whole surgery process that it is heartbreaking to think about calling off the entire thing when unexpected things happen.   I took Zac into the doctor last Wednesday because he had a 103 fever.  They gave him antibiotics for a double ear infection.  Our pre-operative physical has now been postponed to Monday...just two days before we are supposed to leave for Chicago.  I am praying for a healthy little boy so we can get back to business!  Thanks everyone!!

Picture by Jerri Parness