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.