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…