A Hairy Situation

Here we are again...T-minus 4 weeks until we head back to Chicago for our next round of expansion.  Ugh.  It seems like we just got back from the Windy City and although it was beautiful with the orange trees and gentle weather - stepping into March weather...I am not looking forward to.  Especially since Punxsatawney Phil went and saw his shadow.  For Arizona that's just fine....don't threaten me with 6 more weeks of 70 degree weather LOL.  But for Chicago...ugh...better bundle up.  Ok, I admit it...it's not really the weather I'm dreading...the grey cloud that hangs over me has nothing to do with snow - it has everything to do with an angelic little blue-eyed sweetie who is so lovable he can break my heart with just one smile.


This will be the third round of expansion so I now know what to expect...right?  This IS true... if what to expect is to expect the unexpected.  I have enough good nevus mommy friends to know that every round is different.  Just when you think you have it mastered...a complication that you have never experienced comes right along and puts you in a tail spin - flipped ports, strange bacterial infections, stitches that just won't heal, tissue expanders that leak...yep.  Although, there's a world of variables that can go wrong - I believe that the outcome is SO RIGHT!  So...cross your fingers, here we go again...


I was giving Zac a bath last night - because I see Zac all the time, I think I am blind to some of the changes that happen.  He has gotten so many spots since he was born that I definitely don't count them anymore, I don't even really think I see them until someone starts to stare.  But, I happened to notice that Zac's back nevus has gotten SO HAIRY!!  I mean like...need a good mow hairy!  So, I gave him a good trim...but not before I snapped a picture for you.

Not sure if the picture actually does it justice but if you look closely, you can see a lot of hair, especially up on the right shoulder.  Just one more reason that keeps me going forward on our journey of removing his giant congenital melanocytic nevus.  Zac has had a lot of itching these past four months and a lot of severe dryness. Though I cover him in Aquaphor daily, it doesn't seem to totally get rid of the dryness, scales and flakes.  I have had to switch to a prescription hydrocortisone cream a couple times a week.  I hate to use something that's not over-the-counter, but the itching is simply too much.  Hopefully we will be able to get two tissue expanders in this time.  I am hoping for one in the upper right shoulder and one on the left back to continue what we've done on the last two rounds.  It's double the work...but double the reward.  


There is one silver lining this round.  This round will only be 10 weeks.  This is good and bad....good because at the 11 week mark, Zac tends to get really uncomfortable; bad because...well, every fill counts when you only have 10 weeks!  That means it is more important than ever to keep Zac healthy this round, ensuring that we are able to do EVERY fill to it's maximum amount!  Here we grow again!


Our cookbook, Zac's Treats & Zesty Eats is under production and on its way!!  Pre-order a cookbook today and help Zac get out of this hairy situation!

Support Zac in his journey to remove his GCMN and reduce his risk of melanoma!  If you need multiple cookbooks or more information, you can email me at amie@checkingbackwithzac.com.


  

New Beginnings....and Old Business

Happy New Year everyone!  I can't believe it's 2012!!  I would say 2011 went quick - but when I think back on how much we accomplished and went through this year...it seems like a lot shoved into a year ;).  Here's a recap:

• January - Our family traveled to Chicago for Zac's first surgery and were there for 14 days while we learned how to accomplish tissue expansion.  It was stinkin' cold!!!  Zac had one expander placed and a large excision of nevus from his lower back/butt.
• March - A great Nevus Outreach get-together where we met new nevus friends!!  After spending the night in the hospital for an infection, Zac, my Gramma and I headed back to Chicago for the removal of the expander.  We were so impressed by the amount of nevus Dr. Bauer was able to remove!  He also removed a raised, hairy satellite from Zac's forearm - it has since healed so well you can barely see the scar!
• May - Zac turned 1; Zoie turned 5 and we had a festive double birthday party at the house!  Zoie graduated from pre-school and participated and took 2nd in a Kiddeeokee contest for MIX 96.9! 
• June - I passed my CA Real Estate Test!!!  YEAY - I get to keep my job LOL!!!
• August - Back to Chicago for Zac's third surgery and second expander placement.  Dr. Bauer was also able to remove 80% of two very large satellites on Zac's left leg.  These are looking good - we hope to have the remainder removed with the next surgery in March.  And I can't forget about the AWESOME Unofficial Nevus Outreach get-together at the hotel where we met so many new families and even Dr. Bauer himselft showed up!!  My precious little girl started Kindergarten!!  After a rough start with a flipped port and a tissue expander fill gone wrong...we ended the second round of expansion smoothly.
• October - Along with my Gramma, we traveled back to Chicago for Zac's 4th surgery and removal of second tissue expander.  Results were good! 
•  November-December - Our household has been fighting reoccuring colds and a bout with the stomach flu but are determined to start 2012 healthy!

This year has been filled with ups and downs.  We have had a lot of successful surgeries and have been able to stay afloat with our expenses though they have been great.  I just found out that I am already in the hole for vacation time this coming year due to a miscalculation in my 2011 sick time.  This means that I will have even less 'paid' time off from work this coming year.  Ugh...  I know that if I put my faith in God, we will find a way to push forward with the next four surgeries and the costly travel expenses that go along with them.

In March, on my birthday no less, Zac will have his fifth surgery and begin his third round of tissue expansion.  It is the first time that I will be traveling to Chicago all by myself.  Please continue to pray for us in 2012.  Here's a year in pictures to show you how far Zac has come (and to remind me so I can muster the strenght to get through this year...)
Happy New Year, everyone!!

No Sweat...Literally...

Whew...I can't believe 11 weeks have come and gone since we left Chicago.  Today, I am sitting in the same hotel I was in August, getting ready for surgery #4 - the second round- tissue expander removal.  This past 11 weeks has been a whirlwind.  Adding a Kindergartner to our lives certainly made things more taxing.  Books to be read and homework to be done, nightly and lot's of little school stuff.  The greatest challenge being picking up two different kids at two different times in two different locations...guess we have been a little spoiled with our fabulous daytime caregiver Mrs. Bunch who has taken care of Zoie for the past 4 years and Zac since he was 10 weeks old.  So...I apologize for not keeping everyone as informed as they would've liked I simply have not had two extra minutes to rub together and my DVR proves it LOL.

Anywhoo...after an EXTREMELY rough start in this round of tissue expansion, I must say...it was all downhill from there.  After our fills gone awry, I was reluctant to try again but of course knew that this was just a horse I had to get back on.  My little angel Zoie said to me "Mommy, I believe in you...and I KNOW you can do Zac's fill...I just know you can."  Yes people...I have my very own personal Anthony Robbins...:)

Our next fill and every subsequent fill thereafter went wonderfully thanks to my bestie Candy and her terrific girls who were all to eager to keep Zac's attention while we did the fill.  With every fill we were able to get 90cc of saline in!  We are ready for tomorrow's removal surgery with 750cc of saline and lots of pretty new skin!!  Woo Hoo!!  I don't know what size bra he'd need if he needed one but it would be at least an E cup! :)

I will be so happy to have more of this back nevus removed.  There are many people that think that this surgery is for cosmetic purposes so for my friends and family - and anyone considering removal of their child's nevus I have just a few things to say about my opinion on the subject.
I will say that I believe each parent has the right to make choices for their child - this is purely MY opinion on this condition.

• Cancer risks - I mentioned before that Zac's nevus skin has potential cancer risks and even though the risk is small...how small is too small??  I mean...I don't know about you...but 1% is even too much for me.  If he got cancer after the removal, I would know that I had done everything I could and never regret not having done more.
• Fragility - This skin is extremely fragile.  There is little or no fat underneath it - the skin damages easily and takes great pains to heal.  I have heard it gets worse with age.
• Itching!  This skin can be VERY itchy!  Though Zac does not currently have any issues with itching - who wants to wait to find out if he will forever want to carry around a back scratcher.
• SWEAT!  No sweating!  Seriously guys...this skin does not sweat!!!  AND I live in the desert!!  For anyone w/ a child with a torso covering nevus...beware.  I just endured my first real Summer where Zac was in and out of the heat.  NEVER ONCE did I feel moisture on his torso.  His head, however, sweats profusely!  I must admit, living in the climate I do, this is the one that scares me the worst and the one I think is overlooked the most by most parents.  The body sweats to cool itself down and prevent overheating.  If it can't sweat you run the risk of seizures, heat stroke, etc.  Hyperthermia
• Hair...do I really need to go into more detail here...?  I trim the cute little nevus on his eyebrow every two weeks...  And I have heard from adult nevi wearers that over time...nevus hair on the scalp and other places can really thin...  great if it's on your back...not so much if it's on your head...
• Laser - well, laser only removes the pigment...this is what I think of when I think of the words "for cosmetic purposes".  Besides, do you know that laser generally requires more medication for pain management than Zac does with surgery?  I have never had to give him more than Motrin...really!
• Waiting until later...  There was about 3 seconds where I thought about leaving the nevus and letting Zac make his own decision later.  I suppose that someone older could have expansion surgeries done...but this is where I have the strongest feelings that what I am doing is 100% right for my child.  I have seen Zac carry around 750cc of saline, toddle, spin, laugh and enjoy life not even realizing that he has a special little bubble!  There have been no developmental delays - he started to crawl right before his first tissue expander was put in and started to walk right after the second one was put in.  I have seen him the day after removal surgery acting as if nothing ever happened!  His body adapts and heals better than it would at age 5...age 8 or age 16.  750cc of saline is going to cover most of his back...if he were older, wouldn't he need twice the amount to cover such a large space?   He is not aware of stares or questions and the BEST PART....by the time this is done...the only one who will remember it is ME!  I will remember every hospital stay, every injection, every stare, every comment, every explanation, every antibiotic, every dressing...the smell of anesthesia and that yellow gauze that makes me want to hurl.  Essentially, I feel that when this is all done, I will then have achieved what every parent wants to do for their child...take the pain for them.  I am so very thankful and blessed that Zac has the option for such a swift and wonderful removal and that we found Dr. Bauer and his wonderful team and I am going to wrap my arms around such a blessing and welcome it!   

When Zac is older and asks me what it was like going through this process...my reply will be... 'no sweat'.

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.

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

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.

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!