Wine, Tom Selleck, & Expansion

Four weeks into the 8th round of expansion and Groundhog Day is upon us...  The slight cough, the fever, the extra hugs for mommy.  The sound of light sleepless moaning and coughing coming from down the hall as I sit here and put my feelings onto virtual paper.  Worse than your common cold, I know it well... it is most likely an infection or perhaps a virus waiting to turn into one.  I am exhausted.  Not just physically.  I know tomorrow we will be placed on precautionary antibiotics that we most likely will endure for the next 8 weeks.

My heart, soul, and very being are so tired of going through this with my little man. Though we are veterans, though we are close to the end, this is the steepest part of the hike.  The part where exhaustion sets in, the part where you wonder if you were crazy to climb this mountain in the first place.  Sure, the view is breathtaking to see how far we have come... but it is not quite the money shot at the top of the peak. This road is narrowing and the friends who traveled with us before are even at the top of the peak enjoying the view...yet we are not.  We are still climbing, braced with what we need for every expected pitfall.  There is one thing I know for sure.  Some things are better with time...wine, cheese, Tom Selleck...but the process of tissue expansion is not one of them.

Two fills under our belt and we have had to stop until we can get this illness under control.  We go to lengths to prevent this.  Birthday parties at Chuck E Cheese, after school events, bounce houses are all a normal 5 year old's luxuries that Zac has to give up in this 12 week period.  This year we have a new obstacle....kindergarten.  Zac loves school and his teachers do everything they can to keep him away from illness and when it does strike, I know he will be missing out on one more thing he loves.

Please pray for my little guy's health.  He has the most amazing spirit and joyful heart.  Please pray that God gives us the strength we need to keep the pace, stay the course, and appreciate our own journey.

I am adding a private link to Zac's last fill for anyone who would like to take a peek of what it is like to fill his tissue expander.  This round, Zac has three new friends - Thor, Thing, and Scooby Doo, names for his new bubbles.  Take a look at this amazing kiddo...  A Weekly Fill With Captain Happy

Growing Pains

Growing Pains...throughout life...you don't always feel them when it's happening but when you look back and realize how you got through the 'growth spurt' it is truly amazing.  I look at Zac and I simply cannot believe this kid is about to have his 14th surgery!  Even today, he is fully aware that his bubbles need to come out.  This has been a VERY vocal round of expansion.  Gone are the days of simple distractions like a light-up toy or even the iPad.  Zac even plays a part in helping fill his tissue expanders by holding this or that and he likes to point out, after the needle goes in, that it didn't hurt.

The journey seems to move in slow motion now that he is older.  The process is both exhausting and frustrating as the skin does not stretch as much and we get less volume in the expanders with each weekly fill, giving us less expanded skin to work with at the end of the expansion process.  Then there are the several missed weeks we spent fighting an infection but narrowly escaping a hospital visit (PRAISE THE LORD!).   However, there have been many nights of discomfort far worse than any I have experienced.  After the last fill, Zac spent the entire night (well, until about 4:30 in the morning) waking up crying every half hour screaming that his bubbles hurt - growing pains, I suspect.  I fall asleep rubbing his bubble with lotion until the next wave of pain wakes him.

Day to day during expansion has become normal to us.  So much so, that I often cease to notice the stares and hushed conversation Zac's bubbles create.  And great memories are made in the midst of this chaos.  I took Zac to play in a small splash pad and realized that, at almost 5 years old, he had never played in one.  With his size 6 shirt bulging in several areas as the water prompted it to cling to his body, he laughed and bounced around.  The joy and happiness that filled his little heart was overwhelming and that night before he went to bed, he said, "Thank you Mommy for taking me to the water...I had sooo much fun."  By the time his sister was his age, she had hit almost every water spot in town and then some and was able to swim on her own.  However, lessons aren't something we have done for Zac yet.  Something so simple, a casualty of our rounds tissue expansion and healing time.

In the past several months, with the growing number of birthmarks he has accumulated, I have started to worry about the future adversity that is certain to come in the school years. Filling out Kindergarten paperwork has only reminded me of the special accommodations, though small, that he will need.  His sister has played the unfortunate part of guinea pig as I try out schools that offer both caring teachers and students that are taught compassion and hoping I have chosen the right one in Northwest Christian School - a private Christian school I have enrolled them both in for the coming school year.  I feel in my heart that this choice will be the best for both of my children and know that the Lord will find a way for us to pursue this path.






 

The Day I Didn't Cry

I know what everyone is thinking....surely after 13 surgeries under my belt, I must be used to the routine.  Here's roughly what it looks like: 
1. Fly to Chicago

Brrr...it's 0 degrees but feels like -11

2. Wait for the evening phone call that tells you what time slot you won for the following day, if you have a late surgery you plan out what you will do to keep your kid occupied so that they don't notice they are starving from not being able to eat past a certain time. 
3. On the day of the surgery, walk into the hospital and give them your name. Then tell them you know exactly where you are going and that you could basically find it with your eyes shut - get sad clicking sound from the volunteer as they give you the 'aww, I am so sorry' look. 
4. Once you are settled in the room and faking the biggest smile ever for your kid, open all the 'guilt' gifts you just bought them at Target while spending hours in each toy aisle trying to keep their mind off the fact they haven't eaten since 6 a.m. 
5. Catch up with the nurses you have seen a handful of times for the past 4 years.
6. Give your kid the 'happy' medicine that reduces their anxiety and causes hiccups and slurring of words (actually quite entertaining).
7.  Here comes our friend Ernest, we call him Ernie).  Ernie is slow & steady, has a Hotwheels collection that would rival Zac's, and is the one constant.  Ernie always wheels us to the pre-op room.
8. Now in our second holding pattern.  We wait.  This is the biggest anxiety build up.  You feel it coming on - the waterworks - but you refuse to let the fountains spring forth.  I have some lovely banter with Nancy who I just found out is from Midland, MI, she keeps Zac in his cozy warm blankets - which is ironic because the kid hates anything warm.
9.  Then they come to take my precious boy - I am assured that I shouldn't cry because he is 'in the best hands'.  This I already know otherwise I would not have taken a 3.5 hour flight into subzero weather to have Dr. Bauer attend to my child.
10.  Cry.  Cry all the way to the waiting room.  Sometimes cry turns into ugly cry.  Sometimes cry is short & sweet and just causes a minor headache.  Either way...there's always crying.
Now that's a Top 10 worthy of Ryan Seacrest.

I look forward to the day that I don't cry.  Someday it may actually happen but I doubt it.  I am not crying out of fear.  I am crying because I dread when he wakes up in recovery, wanting me to hold him but knowing the discomfort it will cause to move him.  I cry because I know this is not the last time (not even close) that we will go through this.  I cry because I know that I have 12 weeks of living on pins & needles.  Twelve weeks that have become like a game of beat the clock.  Keep him healthy. 
Get those bubbles nice & full before illness strikes or a complication arises and get him to the finish line - not early but right on time.  It's a tricky obstacle course. 

But of all the things I cry about, not one of them is for regret.  Do I wish we didn't have to go through this?  Duh...  But I am so happy we started this early.  So proud of myself that I had the guts to decide for my child instead of telling myself he could just decide for himself later.  So amazed at all we have accomplished and that even in these times that I dread, we manage to see several silver linings.  The biggest one to me during this process has been the Facebook Group for Giant Nevus Removal and the amazing strong parents in the group - if you are reading this and you are contemplating removal or are in the process - know that you are not alone.  There is support out there.  Look us up and let us support YOU. 
Let's go Round 7...our tears are dry and we are ready!!

 

Back to Back

Another year over and a new one about to begin, but some things remain the same.  We will be revisiting Chicago for Zac's 13th surgery and his 7th round of tissue expansion.  13 is a number I can barely bare to utter when it comes to surgeries; 2015 is not a year I ever imagined we would still be having surgeries to remove his Giant Congenital Nevus.  Regrets?  Not one.  But I would be lying to you if I said that my emotions weren't as fragile as the beautiful Christmas ornaments I am about to pack away for another year.  In fact, as I pack away decorations and simultaneously pull down surgical supplies to take inventory, the reality of this next surgery becomes the anti-Christmas. 

Zac is now 4 1/2 years old.  On January 6th, it will be 4 years since his first surgery to insert expanders into his 'normal' skin and remove the Giant Congenital Nevus - a large birthmark - that covered over 3/4 of his core.  I never thought we would still be having surgeries.  Probably because having each surgery takes so much emotion, strength, and stamina that it is just too much to look ahead to the next.  Zac does not heal as well as he did as an infant so the 3 months expanders/ 4 months rest / repeat merry-go-round is not predictable.  Infections, stitches and areas of irritation make it impossible to foresee the outcome of each round of expansion.

I accept that this is the journey we have chosen and without accepting it, I would've missed so many wonderful things.  The incredible friends who support me, the bravery in Zac's heart, and the ability to persevere and put my faith in His hands, have all been blessings that have changed my life.  Though even with these blessings - I needed to take a break from writing this blog this past year.  I apologize to my friends and family who I know looked forward to reading to check back with Zac and keep up to date with his progress.  I also apologize if this post sounds a bit somber.

I have realized more in these past 6 months how right the decision to have these removal surgeries was.  Waiting until he was older would've only lost valuable time.  As Zac is now 4 and very vocal, here is what I now know for sure, yet only suspected previously.  Nevus skin is itchy.  It is not unusual for Zac to wake up with pajamas dotted with blood from where he has scratched so violently he has torn his skin.  Zac does not sweat like you and I and has proved very sensitive to our Arizona weather.  He constantly craves cold from touching his outside wall at night to asking for his quilt which he calls his 'cold blanket'.  He will tell you he hates to be hot and is always asking me to turn on the cold air in the car.  Kind of makes me wonder if this is the right climate for him.

While he may start to remember these surgeries, I bet he has very little recollection of the 12 others he has had which also makes me so happy I started early.  Please pray for my little guy who now grasps the reality of what happens when we go to Chicago.  It is so much more difficult on my heart to hear him say he doesn't want to go.  Pray for His hands to guide Dr. Bauer in surgery and that we have a smooth and quick recovery and a successful round of expansion.  And of course for safe travels as we get ready to make our 13 trip on our own, just the two of us, into some miserable weather.

Rough Patches

Owies
 

Well, we got through three pretty successful fills when our ride came to a complete stop....thump, whiplash (permene ser sentados por favor...).  Even though our hands and feet were in the ride, it didn't stop us from achieving a little damage.  This is definitely the toughest round I have had to date.  Here is the key thing about tissue expansion, just when you think you have experienced every complication under the sun, something comes along that makes you feel like a total novice.  I am convinced that I have been given this task to teach me patience though my patience is wearing extremely thin. 

Sunday night I came home to a sick little boy.  Plagued by a very high fever.  He was whiny and crabby and he was complaining that his bubble hurt.  It was only three weeks ago that I sat in a room at Phoenix Children's with this brave little man while he was poked and prodded and given a round of IV antibiotics.  And now, I was facing a morning visit to the pediatrician and a little chat with Dr. Bauer's office (and I had a pretty good guess as to what they would say).  I visited the doctor's office with a crabby little boy and a little girl who was torn between concern and total devastation as our highly anticipated - planned for weeks mommy/daughter day was cancelled due
 to the circumstances. 

Dr. Bauer's instructions were to give Zac 2 - 24 hour rounds of Rocephin - an antibiotic that is mainly administered by IV.  I later found out, the hard way, that if given via the typical shot, it should be prepped with plenty of saline and Lidocaine (what we put on Zac's ports to numb them before we poke them).  What happens if it is not administered this way you ask?  Well let me tell you.  It BURNS LIKE HELL!!!  So, when the drug was being administered, in the rear end,  Zac jumped about a mile in the air and started screaming on a level in which I have NEVER heard him scream before.  This resulted in the nurse having to get another needle so that she could continue the first round of this antibiotic.  So then I had to hold him for something that I knew was going to be horrible.  All displays of me being strong went completely out the window.  I started to cry and looked over at Zoie who was already crying. 

Before & After shots
 

My poor little guy.  And I had to do this again...no way.  Not a chance.  I went into the pediatrician the next day and told him there was no way I was going to have Zac go through that, even if they needed to admit him to the hospital to give him a proper round of this antibiotic via IV.  After inspecting the bubble and noticing its overwhelming redness and bruised appearance.  Long story short, we got the second shot. Though I was promised this shot would be prepped correctly and done with a nurse who knew better how to administer this shot.  Though it wasn't as horrible as the first shot, it has left a lasting impression on all three of us.  In fact, as we were cleared to do a fill last night on the other two bubbles, Zac threw a fit.  He has never been afraid of fills before.

Well, two shots of Rocephin was just the beginning of the ride.  Our week was followed by puking and extreme diarrhea - a combination of some type of virus paired with extreme doses of antibiotics.  Add a handful of random household malfunctions and you have one hell of a thrill ride.  One I do not care to ride again.  The rough patches have been extreme this past week.  They have seriously had me second guessing myself over this entire thing, as much as I know that this journey is the right one for my son, right now there is a patch of gray and continuous cloud that follows us.  I am hating every minute of this round.  On the upside, time is going by quickly but it is very disappointing to not be able to fill all these expanders to their capacity.  Please keep us in your prayers.  1. That we can complete this full round without any complications that would cause us to end it early.  2.  That Zac can stay healthy through the rest of this round.  3. That his expanders get/stay healthy so that we can gain some much needed volume and see the amazing results we long for.

"To be brave is to behave bravely when our heart is faint.  So you can be really brave only when you really ain't." - Piet Hein



 

This picture cracks me up...ALL BOY here...L

 

Cloudy With A Chance Of WTH!?

I often joke that going through a round of expansion feels like there is a proverbial storm cloud looming above your head for the entire 12 or so weeks.  On some days, you may not know it is there as it may just be offering a small bit of shade.  You can’t put your finger on it…but something just feels different.  You can’t help but cowl just a bit, anticipating either light sprinkles or a full on microburst.  Our weather forecast for the past couple weeks…Cloudy with a Chance of …WTH!!?? or What the Hell??!!

 

After our first week home, I was feeling excited.  Yep…I said it, excited!  I was just convinced that this was going to be the best round of expansion I have ever experienced.  So I was feeling really good about the first fill.  I got everything set up, got Zac all numbed up in the necessary areas and gathered the family for our ‘Sunday night main event’.  Daddy’s job…providing entertainment & distraction; Zoie’s job…my loyal assistant.  FILL COMPLETED!  A success!  Kudos to Daddy’s breakdancing and Zoie’s amazing ability to follow directions.  Now for the pulling of three drainage tubes…just clip the little stitch and pull gently on the tube – extracting it from the body (while praying your 3 year-old holds still enough you won’t gouge him with the scissors).  First tube – we’re doing great!  Second tube – woo hoo, almost done!!  Third tube, just a little clip of the stitch, I am a rock star and a little tug and…and…ARGH!  The tube will not budge!!  Why isn’t the tube coming out??!!  I tried positioning Zac on his side, on his back, practically held him upside down by his legs and it would not budge.  Was that a strike of lightning…sigh… 

Always a new lesson to learn in the art of tissue expansion.  I got on the phone and started calling my support group of expansion mommies.  Out of all of them, none of them ever had this issue except for one mom who happened to be at Dr. Bauer’s office when it happened (lucky her) and the nurse just gave it a really good yank and it came out.  I finally got a hold of Dr. Bruce Bauer who instructed me just to pull on the tube and cut it, letting the other portion be absorbed by the body.  He told me that we would get the free-floating part of the tube when he removes the expander in November.  This did not give me warm & fuzzy feelings but what other choice did I have.  I clipped the tube and let it retract end of story…(thunder cloud retreats) and Zac gets a much needed bath.   

Someone is NOT happy at Phoenix Children's

The next weekend, Bruce’s best friend was visiting Flagstaff for his daughter’s soccer game and we thought we would make a family trip of it and spend the weekend in cooler weather.  So, I attached my imaginary storm cloud to the van along with my expectations of two wonderful family days – my thoughts in the happy bubble consisted of family walks through crackling leaves, feeding ducks and having coffee in the morning in a place that wasn’t 90 degrees the minute you got out of bed.  The reality – Zac spiking a fever the moment we hit Flagstaff, crying and saying that his throat hurt (can’t you just hear the storm brewing).  We arrived at our home for the next two nights and ruled out turning right around and driving back home.  I really didn’t feel like his fever was typical of the infections he has gotten in the past.  So Zac and I stayed cooped up in the room on Saturday. 

 

Zac was miserable.  Though he was drinking plenty of fluids and the Motrin was bringing down the temp slightly, the kid was sweating profusely out of his head (I think I have mentioned before that the torso nevus he has decreases his ability to sweat elsewhere).  The nights were miserable as he would barely sleep and would wake up every 45 minutes screaming that his throat hurt, he couldn’t ‘see’ and he couldn’t breathe through his nose.  There was no redness on the expanders indicating an infection, however one port did appear to be swollen….sigh.

We cut the trip a tad short and came home early Sunday morning.  My goal was to wait out the weekend to be able to see the pediatrician on Monday morning but when his temp hit almost 104 – I knew we needed to get to Urgent Care.  We headed to Phoenix Children’s West Valley location to admit Zac.  I really wanted to wait for Zac’s pediatrician, there is something comforting in knowing that the person treating him fully understands what the situation is without me having to explain EVERYTHING from the beginning.  I was also so sleep deprived that I didn’t feel like explaining anything.  However, I wasn’t going to put him through another night of feeling miserable.  At Phx. Children’s, they ruled out strep throat, which had been running rampant through Zoie’s school.  They then decided to do a blood draw and prep him for IV antibiotics as a precautionary measure due to his past history.  Where I was unbelievably lucky in Chicago, I was unbelievably unlucky here.  From the minute we walked in the door, Zac was crying and screaming at the top of his lungs at every occurrence - from the simple pulse monitor on his finger to the drawing of the blood.   We were released to go home and wait to see if the round of antibiotics helped.

Our mystery bruised area

The next day, we had a follow-up visit with Dr. Mitra, our pediatrician.  By then, Zac was starting to turn a corner and was at least in a better mood but was still running a temp.  Dr. Mitra suggested that we were probably dealing with a nasty virus and not an infection due to the fact that the antibiotics did little to affect the fever.  Upon looking at Zac’s expanders to check for any signs of infection, the incisions and coloring looked good, however I noticed a sort of bruised area on the middle expander.  I still haven’t quite figured out exactly what it is.  Zac’s fever eventually went away all together and he was put on a 10-day antibiotic just to protect the tissue expander from any type of infection.  Dr. Bauer said to go ahead and do a fill just taking it easy on that middle expander. 

We missed one week but are back on track.  Forecast for tonight’s fill…Cloudy with a Hope of Silver Lining… 

 

 

My Happy Bubble

Grouchies
 

Well, we made it into our 5th round of tissue expansion and I have to say I am beyond blessed to be this kid's mother.  I have been a nervous wreck with just the thought of this round so I decided that I was going to stay in my special place...my Happy Bubble.  If I stay happy, he will stay happy...well...that is after we shook out our grouchies before getting on the plan to Chicago.   As Zac strutted onto the plane pulling behind him his brand new Lightning McQueen suitcase, I was noticing all of the smiling glances that came his way...then, out of nowhere...
Lady in second row of plane: "Does he have the measles?!!?"
Me:  "Huh... Uh...what?...Uh, no...they're just birthmarks..." 
And then...because she could not possibly end on that note...
Lady:  "BIRTH marks??" (as if I was lying to her)
Me:  "Uh huh...just birthmarks." (shuffling past her aisle to find our seat)
Really lady?  Yes, I am taking my kid onto an airplane FULL of people with an active communicable disease!  And REALLY...have you even SEEN what measles look like??  POP!! - what was that??  Oh, I know...it was the sound of my magical Happy Bubble being pierced by ignorance.  I don't know why people seem to think they NEED to vocalize every thought in their head.  Not to mention...it's definitely not what you say...but HOW you say it.  I want to say that I absolutely welcome people asking about Zac's condition however, it was clear, given the situation, this woman had no interest.  Let this lady ruin my place of peace & tranquility...nope...but it did take time to blow my Happy Bubble back up.

Zac handled this round like a true champion.  The day before surgery, we walked from the Ronald McDonald House to Navy Pier...yep...no stroller just a beautiful stroll.  Zac's eyes lit up when we rode the enormous 'steering wheel' (Navy Pier's famous ferris wheel)...twice.  We took a ride on Thomas the Train, ate ice cream and had so much fun.  We had a great day and I hated to see it end.  We got our call for a 2 p.m. surgery.  Sigh...



Pre-surgery day at  Navy Pier
 

I was really dreading a 2 p.m. surgery...I mean...that's a long time to keep a hungry kid occupied!  Luckily, our time difference is 2 hours so we slept as late as we could and just took our time.  Enterprise rent-a-car picked us up from RMH.  If you ever stay at RMH - it is such a waste to rent a car as it will most likely end up parked in the garage at Lurie's Children's Hospital to the tune of $15/day.  Our rental car process went very smooth and we were on our way.  A quick stop at Starbucks and then onward to my favorite place to waste time...Target!!  Specifically, the toy aisle of Target.  We walked into the store and not five minutes after picking out a six pack of Hot Wheels, I received a call that Dr. Bauer was running early and they wanted us to come right in.  This day was moving fast.

My little hero amazed me.  I was very honest with him right from the start.  I told him that we were going to the hospital and we were going to get bubbles.  I am not sure if he fully understood what the 'bubbles' were as he made a reference to blowing bubbles later, but I know that when I acted excited...he did too.  I had been saving a special Matchbox Disney Bus and once we got into the pre-op room, I told  him to close his eyes - when he opened them, he exclaimed, "Oh wow Mommy!!  Thank you SO much!  I LOVE it!"   After being given the sedative they always give before the surgery, Dr. Bauer came in to check on Zac and to explain to me that we would have THREE expanders this time.  (mental note...get IN the Happy Bubble...)  As Dr. B was talking, he rested his arms on the rail and Zac looked up and him and took him by the hand.  It was honestly the sweetest moment. 


I love that little face - and his new signature double thumbs-up.

The surgery seemed to pass by so quickly.  I even got to meet up with some friends I met at last year's Nevus Outreach Conference.  In no time at all I was in recovery with my little guy.  We were able to leave the hospital that night so that we didn't have to deal with multiple nocturnal interruptions and headed to a nearby hotel.  As we got out of the car and I put him in the stroller my sweet boy said, "Mama, do you got my cars?"  I laughed and said that I did.  He said, "Are you sure you got ALL my cars?"  This kid was already turning a corner - amazing.  He slept pretty soundly surrounded by his cars, waking only to keep up on our Mortrin and Tylenol.  The next day we got a full dressing change at Dr. Bauer's office and headed back to RMH. 

Recovery was not as bad as it was in my mind.  He could not walk for days, but did insist on continuing to use the potty himself.  Being newly potty trained, I was worried we may regress a little in that area...  We made the stroller extra comfy with his special quilt and he was happy to ride around which meant lots of walking in the city.  We got to meet two Nevus families while staying at RMH and it was wonderful to spend time with new friends.  Good things happen to those who do not stray from their Happy Bubble.

Back in the Saddle

If you follow this blog, you have definitely noticed we have been on hiatus.  Zac’s last round of expansion left us all a little gun-shy as it would any family.  I remember when Dr. Bauer told me after Zac’s last removal that it might be good to take a longer break….longer than the 4 month separation between surgeries.  I remember tearing up.  My first thought was, ‘I can’t take a break…I NEED to get this DONE!!”  When I asked Dr. B about it the next day, he assured me that he mentioned the break mainly for my benefit.  WOW – I must’ve looked like a real basket case. 

I thought six months would be a good break.  I thought it would give Zac’s skin ample time to heal and it would let us all enjoy some time to be ‘normal’ and it was FABULOUS!!!  Zac started pre-school a few weeks ago and loves it, what a big little man he is getting to be.  Still an absolute flirt and joyful spirit.  I scheduled the surgery for late July, and then come June, I pushed the surgery back to September, not because of Zac…because of me (ok, and partly because the humidity in Chicago in July is disgusting – I am a dry heat girl).  I am blessed to know so many families who travel this journey with me.  They have ALL had at least one round of expansion that did not go the way it was planned to.  So, I began to feel a little disappointed in myself that I couldn’t quite get over my fear of getting back in the saddle on this thing.

Zac's First Day of Preschool

Most everyone knows that Zac and I typically travel to Chicago solo.  This is not only because it is more affordable, but because it allows my daughter to stay in school and my husband to continue working so at least one of us is earning a paycheck.  I have become an AMAZING TRAVEL MOM!  (Travel Tips to follow ;)  I really don’t mind it.  Sure I could use at least one extra limb at times or someone to simply sit in the car with Zac while I run in to get some food or grab something out of the room, etc.  Which reminds me…did I tell you about the time I was checking out of Ronald McDonald House and  I was trying to get all my luggage and Zac (who was in a stroller at the time) into the elevator—let’s just say, I am glad it was not Zac who was in the elevator all by himself until my luggage returned to my floor a very long three minutes later!!!  And for those of you staying at RMH – those elevators doors are quick!

Anyway…enough travel down memory lane…to get to the point, I had such high anxiety about this trip that I was literally going down a list in my head. Zac is older, how will he react, how am I going to keep it together, how this, how that…how, how, how??  I am completely aware of the fact that how Zac reacts to this surgery will be a direct result of how I react.  Some may disagree, but I know this to be true.  The more anxiety you have about surgeries and filling the expanders – the more your child will react to your emotions.

When I explained my anxiety to my fellow moms (you know who you are and I love you to the moon and back!) they calmly (kicked me in the you know what and) reminded me that 1.  I have done this before - - lots of times.  I CAN do this and that I WOULD just do this – because this is what we do.  2.  “No one said it would be easy, they just promised it would be worth it.”  3.  Baby steps…one step, one day at a time.  There is no sense worrying about things that haven’t happened.    

So, I am going to get back on the horse and ride this one out…please pray that the trail is slow and easy and the conditions are mild – and that there’s time to stop and smell the cactus blooms – (okay well, those don’t really smell but there just aren’t that many roses in Arizona – I am sure you get the picture). 

Double Trouble for the Bubble

Just when I had excepted the 'hole' situation and had it under control...the other shoe dropped...  One night Bruce and I noticed that the back of Zac's shirt was a little spotted...it wasn't blood but we lifted his shirt to make an assessment.  It looked like the scab on the incision line was a little wet.  Nevertheless, the incision was not red or irritated so we just let Dr. Bauer's office know.  In less than two days, the incision had opened up! In less than 24 hours after it opened, it was the size of the first hole (bigger than a quarter) and just 12 hours after that...you don't even want to know!

The size of the hole on Saturday night

The size of the hole by Monday

I sat on the bathroom floor just staring at the gigantic hole in my son's back wondering how on Earth I was going to get through this.  For the first time I can remember in all my rounds of expansion I was in a major panic. I was praying so hard that I wouldn't need to handle the tissue expander falling out on my own, I was worried that the 'good' skin around it would now be scarred and unusable, I was just without words. I contacted Dr. Bauer and he told us to pack our bags.

On Saturday night when most families were at Halloween parties - I was on-line trying to navigate plane fares and travel arrangements.  While Dr. B said Tuesday or Thursday would be best for surgery...there was no way financially to get there on Monday for a Tuesday surgery so we booked tickets to fly out on Wednesday, hoping for a Thursday surgery.  We didn't have a 'scheduled' surgery yet.  We were at the mercy of possible cancellations of other patients due to illness and the storm on the east coast but Dr. Bauer's office assured me there would be a surgery. I quickly packed our things...thank goodness I had never really had a chance to completely UNpack from Utah - we were going to need a lot of those warm clothes. All the things we typically have weeks to prepare for were all happening at once.

Wednesday morning I had a call from Dr. Bauer's office...they wouldn't be able to get him in to surgery until Friday but assured me that the skin would stay intact and that everything would be okay even if the expander fell out...this was going to be the scariest Halloween ever!  We boarded the plane - Zac was so crabby, not wanting to walk at all.  He kept telling me he wanted his bubbles out.  We arrived at the Milwaukee airport (which by the way is much more affordable than flying into Chicago and almost equal distance with a much nicer drive).  We got into our rental car and started the drive to the hotel when I noticed we just might make it to Dr. Bauer's office before they closed!!!  I called Mim and told her how close I was going to cut it and she told me to come on in.  I was SO relieved!!

All ready for Trick or Treating

We arrived at Dr. Bauer's office at 5:10 and Dr. Bauer and Mim were waiting for us.  Dr. Bauer had the expander out in just minutes causing Zac only a little discomfort and  giving me the greatest relief ever.  It really truly was just as easy as as they had all said.  Tissue expander pops out....clip the line to the port, dress the wound.  Amazing...and Amen!  Zac and I were able to celebrate a little bit of Halloween when we stopped at the local mall to eat dinner though the biggest 'treat' was having his bubble out. Zac was in better spirits but still not himself - where was my Captain Happy?

Thursday was a day of anticipation - waiting for surgery on Friday.  I promised Zac a train ride so we went to Gurnee Mills to ride their little train but nothing seemed to cheer this little guy up.  He even threw a couple of major fits which is totally unlike him.  Thursday couldn't come quick enough.  We spent the rest of the day cooped up in the hotel - Zac happily playing with his trains until we got the call for our surgery time and then it came...surgery at 1:30 be there at noon...no food after mid-night.  This was starting to become very familiar...

Captain Not-so-Happy riding the train.

Holey Holey Holey

Little Boy Blue

After a successful trip to Chicago, we got home and we do what we always do.....wait for the other shoe to drop.  Now, anyone who knows me knows that I am a pretty positive person so by waiting for the other shoe to drop, I don't mean to sound whiny...it's just reality and it's better to be prepared for it than not.  We had had a very high and low week as a family.  Bruce and I celebrated our 10th anniversary the day before Bruce's dad, Gene passed away at 77.  So emotions were running high in the Moller household.

Three weeks into Round 4, after just two expansions and a constant watch on a wound Zac had gotten on his skin over one of the expanders -  Zac developed his trademark fever.  When his temp reached 103 one night, Bruce and I just looked at each other with that all knowing glance that a mother and father have between them and knew that Zac would need some hefty antibiotics and we would be seeing the inside of a hospital soon, spending a night (if not more) on plastic beds and pillows, separated - he home with Zoie and me comforting Zac through the night as a steady stream of nurses and CNAs interrupt his sleep all night.

Well, we weren't entirely wrong...  Upon visiting our new pediatrician, we did find Zac's fever to be high and his WBC count to also be high.  He also didn't like the way that Zac's wound looked.  But instead of rushing us to the hospital, he decided to administer a 24 hour antibiotic in the office.  It wasn't fun - blood draws and shots never are for our little ones, but when all was done, we were able to go home and rest in our own beds.  Upon returning to the pediatrician the next day, he agreed that Zac looked better but his WBC was still high which puzzled him.  So we called Dr. Bauer on his cell phone.  He explained to both Dr. Mitra and myself what steps to take, assuring Dr. Mitra that Zac did not need to be hospitalized and that we did  not need to do anything additional to the wound.  We were prescribed a 10-day antibiotic to administer at home.

Dr. Bauer instructed me to keep the wound clean and covered by either Tegaderm or Duoderm which are both basically heavy duty band-aids.  The Duoderm is to give the wound stability and keep it from growing.  The wound was draining quite a bit which is pretty gross so we have to put a fair amount of gauze over the bandage and bodice netting - which Zac calls his sexy shirt - over the trunk of his body to hold the gauze in place.  The wound also seems to be getting bigger.  While gravity is on our side because the wound is on the top of the back so the expander is not weighing heavy on it trying to push it open, expansion on this tissue expander is done, finished....out of the game, just like that.  :(

We traveled to Utah for the weekend to celebrate Bruce's dad's life.  It was beautiful!  All the Fall colors in full swing.  The kids had a great time playing outside with their cousins; Zoie digging up worms and Zac scooting along on a tricycle...back and forth, back and forth.  We got to see rivers and mountains and even the Salt Lake City Mormon Temple!  We traveled with all the necessary medical necessities.

Fishing in the River

Big toothless smile

Me, Zoie & Gramma at the Temple

When changing the Duoderm over the weekend, I noticed a little raised part at the top of the wound...upon closer inspection...to my horror I knew exactly what it was.  The very tip of the expander was getting ready to poke through the hole.  Did I freak out??  No...not really.  Well...maybe a little but it was a silent freak out.  Only my Gramma and husband could really tell.  The diagnosis...keep the hole covered and pray the expander doesn't fall out.  Seriously friends...that's it.  

So, I begin my 7 week prayer to keep the hole from expanding because 1) I know there's nothing I can do except what I am already doing  2) If anyone can keep that thing in place...He can and  3) It's the only thing that's going to keep me from going completely mental.   

My 7 Week Prayer

"God, I love you. I don’t love this situation. But I love you. Therefore, I have everything I need to keep putting one foot in front of the other and walk through until I get to the other side of this.” 

Thank you Lysa TerKeurst via my friend Denise

The good news is we still have two other expanders to fill and in the words of Meatloaf...

"Two outta three ain't bad"...

***************************WARNING PICTURE BELOW*****************************

You can see the clear expander coming out of the hole, the tip on the top left.  On the right is a remnant of Duoderm.

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.  So...you 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 in...you 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 day...as 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 particular...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  

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 began...you 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 it...today 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 trains...in 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 cry...one 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 days...it is going to take a few more surgeries to finish what we have started here.  But as for the 7th surgery...it will go down in my book as lucky #7!

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