Zachary James

Zachary James

Thursday, October 24, 2013

Rough Patches

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 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



  1. Hi Amie! I'll be sure to keep Zac in my thoughts! My name is Heather and I was hoping you could answer my question I have about your blog! Please email me at Lifesabanquet1(at)gmail(dot)com :-)

  2. Hi, I just stumbled across your blog. What an adorable sone you have! I was born with an almost identical cape nevus (it's mostly excised now) and similar satellites. I really appreciate hearing about your family's experience. Thank you for sharing!