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).