Zachary James

Zachary James

Wednesday, August 24, 2011

Flipping Out!

A visit to Shedd Aquarium

Sorry we have been MIA for the past few weeks.  Truth be told.  I was not as...well, motivated for this next round of expansion and I have been trying to find ways to get myself excited to share this journey.  For all my fellow nevus mommies (especially the ones considering removal) I want to be 100% completely honest because I want you all to have a good idea of what you can expect; For all my friends and family, I don't want to completely worry you by taking you down the road of trials and tribulations.  So...with that said, here comes an update on the past 3 (or more) weeks...

We came home from a great trip to Chicago.  Tissue expanders inserted...check!  125cc of saline as a great head start...check!  Kids didn't drive us completely nuts on the plane ride home...check!!  I wasn't really excited that this time around, Zac was still draining quite a bit so Dr. Bauer's office was unable to take them out for me before we left like they usually do.  I was also not really excited that this time around, the port is located in the upper thigh/hip area - making it a much deeper target and harder to see.  So since the drain was still in, I had to keep Zac a little more under lock and key - I didn't want any additional exposure to the opening.  It was bad enough that while we were in Chicago one day (at the mall no less) I went to change the drain and the needle popped out of the drainage tube!!  I was a little freaked out as I tried to shimmy the blunt end of the needle back up into the tubing.  Because of this I had to use a little extra caution when changing the tubes.

The day we got home, Bruce had to go back to work.  Not just back to work at the computer, but back to work traveling!!  I won't lie, I told him we would be fine but was having a complete panic attack thinking about being alone.  When 'first fill' day came along, Bruce was still working out of state so I had to enlist in some additional help from my close friend Candy.  I packed up all my supplies and headed over to her house ready to tackle our first fill.  I applied the lidoacaine and waited for our big moment.  We got Zac into position and just as I went in to access the port - I hit the button on the needle that makes it retract!!!  CRAP!  I should've known I would do this!  I usually do the first time around.  Trouble was...I didn't have an extra!  So...we piled into my car and headed to my house quickly before the lidocaine wore off.  We once again got him into position and this time I went in w/ the needle.  I thought I was in far enough...thought I felt the plate of the port.  I won't give you the gory details...but let's just say, I was not able to access the port correctly.  Zac was screaming, I was freaking out...and though she hid it well...I am sure Candy was freaked out for life.

I decided that I couldn't possibly go thru this again w/out the help of a professional...so I immediately called my (BNMF) best nevus mommy friend who just went thru expansion with ports in both thighs.  I went over to her house the next day, nervous as hell but ready to try again.  We got everything ready to go...but when I went to access the port, I could tell something was not right!  The port had FLIPPED!!!  Crap!  Why didn't I pay more attention in all of those Nevus Outreach Support Group strings about flipped ports!!  We called Dr. Bauer's office and talked to Mim who was so wonderfully calm and she explained to me how the port would have to be flipped back over.  One problem...I was so completely shut down by now, there was no way I could do it.  Thank God my BNMF was thinking with a level head.  Call Dr. Price she said.  I did.  Come on down she said...simple as that.  After a very good cry (along w/ my BNMF) I headed to Phx. Children's Hospital.  
Waiting for Dr. Price and a good look at the removals on my leg!

Let me tell you that Dr. Harper Price and her assistant, Kellie are completely awesome, phenomenal...I could really go on and on....  Dr. Price flipped the port in a matter of minutes, removed Zac's stitches from above his knee, then she and Kellie told me they would help me do the fill since I had everything with me.  We started the fill but this time something else was weird.  I had to push SO HARD to get the saline in.  I was using all my strength to do it and when I got to 25cc...it wouldn't take another drop!  UGH!  I called Mim and she told me that it was possibly that the line was kinked and to try moving his leg and/or lifting up on the expander.  Well...needless to say, Zac had been thru enough at this point.  So we called it quits for the day and Dr. Price and Kellie graciously offered to help me with future fills....(Oh and did I forget to mention that this same morning was the day my precious baby girl started Kindergarten???  Did I also forget to mention that since I was stuck at PCH I didn't get to pick her up on her FIRST DAY but thank God my Gramma had come to visit/help me and was able to pick her up!!!)  How much can a person take in a 24 hour period...huh?  Well...don't ever ask that...

Fast forward a few days....husband back...check!  Zoie enjoying school....double check!!  Ready to try another fill...a good one this time...check!!!  Ready to go back to work....check, check, check!!!!  The night before I got ready to return to work (and before his next fill), I felt Zac's head...it was really warm.  I started to get this panicky feeling and I actually got down on my hands and knees and started praying.  The next morning, I was getting ready to go back to work...after all it's just a fever I told myself.  He can stay home w/ Daddy today...  On my way to work, his temperature rose to 102 and my heart just sunk.  I couldn't possibly go on w/ my day at work knowing that something was wrong.

I took Zac to our pediatrician who ran a blood test and sure enough...just as my gut had told me, Zac had a pretty good infection.  One big enough for a night in the hospital and a round of IV antibiotics.  So, we spent the night at John C. Lincoln Hospital - had wonderful nurses (not so good food - bleh!)  We are home now and hoping we can get a good fill done soon and I removed the stitches that he had left on the ankle of the left leg myself!  Please pray that this round of expansion starts to go smoother - mama can't take much more stress...really...  :)  To those of you who have been especially close to me this past week (and you know who you are) thanks so much for being there for me - I can't tell you how much your support has meant to me!
Feeling better at JCL in the playroom
 (I don't know what is up w/ the teapot but I couldn't get it away from him)

Getting my antibiotics and starting to feel a little better.

2 comments:

  1. Trying to find a positive to this trying round...at least it is not the first time and you know that things can go smoother! Hang in there Mama!

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  2. Oh my gosh! I would be having a nervous breakdown. You are an amazing woman Amie. Just think how good it will be when it's all over, thats why you're doing it in the first place. He is the sweetest little boy in the world. Hang in there, let us know if you need anything:)

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