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 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 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 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.

Sunday, August 7, 2011

Oh What a Night!

What an AWESOME NIGHT!  It was so amazing to finally meet so many wonderful fellow nevus families in person! AND a special visit from Dr. Bauer was the icing on the cake.   
Zac had a great time meeting new friends and the night seemed to go by so quickly that I missed talking to a few families :(
Thanks to everyone who made it - it was a night to remember.  And thanks to Kristi for joining us and taking all of our pictures :)
Christine, Merilee, Beth and me

Me, Zac and Dr. B

Part of our Nevus Family

Friday, August 5, 2011

Rest Assured

We are resting peacefully back at the hotel after leaving the hospital at 10 a.m. this morning.   I decided to spend the full night at Highland Park Hospital because Zac seemed to be in some pain and very restless after coming out of his surgery.  After some T3 later in the evening from our favorite nurse Sandy, and a half of bag of fish crackers, he was able to get some good sleep.  
Dr. Bauer was able to remove 85% of two of the nevi on his left leg, the one on his ankle and the one above his knee, both bigger than the size of a silver dollar.  He will remove the other 15% on a future surgery.  The satellite on the ankle was also very raised and pretty hairy.  I can't tell you how excited I was when Dr. Bauer drew his two little X's on these spots with his surgical marker.  The sat on the ankle seems to be a real attention getter and I am so glad to have it gone.
This morning when the nurses came in to change Zac's dressings he was all smiles and giggles.  What an amazing kid!  One of our nurses, Peggy, remarked that this was why she loved doing peds.  That's why we call him Captain Happy!

at 3 months old-ankle sat
at 3 months old-ankle sat
at 3 months old-sat above the knee
Dr. Bauer also placed one 750 cc expander in his left side, leaning more toward the front since there is more 'good' skin there and gave us a head start with 150cc - it will hold up to 1000 cc!!!  The port is located in his upper thigh.  I'll post pictures for those of you who are curious when we go to our next check-up on Tuesday.  He also only has one drain - which is nice for Mommy because those things are gross.

Now for more exciting news.  When Wendy booked Zac's surgery the same day as Sully and Josh's and w/in a week of Brooklyn's the four of us mommies were very excited to reunite again.  We all booked the same hotel so that we could all be close to each other for some more bonding time (Merilee brought the blender and one other unnamed person brought the tequila LOL).  We realize we are so lucky to have each other not only for moral support but for the ability to help one another with whatever is needed.  For three of us, our girls are the best of friends and love to play together.
As we drew nearer to our trip, we found two other families with surgeries around the same time and we convinced them to stay at Staybridge Suites with us...then came the idea to get the word out to see if there were any more families visiting or nearby who would like to join us for a small gathering on Sunday night!  Before we knew it, we were up to about 9 families!!  Our hotel is so super-fabulous and told us we could use the dining hall to host our get-together.  Today we found out we could possibly see some other VERY special people there...Kristi & Susan from Dr. Bauer's office....and maybe even Dr. B himself!!!  What a great photo-op that will be :)
I am soooo excited to finally meet in person, some of the women I already call close friends despite us having never met face-to-face.  This is a true gift from God.

Thursday, August 4, 2011

Ready For Round 2

I have been procrastinating posting on this blog.  I think part of me thought that writing what was going to happen next would make it come faster...but here we are in Chicago again ready for Round 2 of tissue expansion.  I should be very excited about this round but like any mommy whose baby just went in for surgery, I feel a little anxiety.  We just dropped Zac off to Dr. Bruce Bauer 10 minutes ago and I am really excited to see the progress!!
For this round of tissue expansion Zac will again most likely have only one tissue expander put into the same area as before.  Dr. Bauer was going to try to put one into the top right shoulder since Zac's nevus stretches up to the top of his shoulder on one side, but he doesn't think Zac's shoulder is big enough yet to get really good results from placing an expander there.  What I am extra excited about is that after hoping for removal of the satellite on Zac's left ankle for the past two surgeries, this time I really think Dr. Bauer is going to be able to do it.  What I am extra, extra excited about is that he is also going to try to remove the large satellite  above his knee as well!  I am feeling pretty good about it since Dr. B actually marked the two areas with the surgical pen this time.  :)  
We just sat down in the waiting room and are anticipating about a 1 1/2 hour wait.  Zoie is back at the hotel playing with her friend Cali (thanks Merilee!!!) and I am sure is much happier there than here with me and Bruce.  I am looking forward to posting more this week as we have many exciting things going on!  I'll give you a little spoiler...there are at least 6 fellow nevus-families staying at the Staybridge Suites in Lincolnshire...woo hoo!