Zachary James

Zachary James

Sunday, October 6, 2013

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… 




  1. Praying for Zac's complete healing , may his fill be completely normal. Praying for your family too! God bless you!

  2. Thank you for the update. Continued prayers, my friend.