Zachary James

Zachary James

Thursday, March 22, 2012

When It Rains...It Hails...

It's been a roller coaster ride since we got home from Chicago....but isn't it always during expansion.  So...last week, we finished Zac's first fill.  A very good one too...80cc in the front tissue expander; 90cc in the back expander.  I put Zac into bed ending a great day.  He was happy, ate well, seemed very normal.  At about 10:30, he woke up crying and I went in to comfort him.  I always get a little freaked out when he cries at night or expresses any discomfort during expansion.  I rocked him back to sleep, checking him for signs of a fever....nothing.  At 3:30 I woke up to the sound of Zac crying and calling for me, this time when I went in to get him he was very warm.  His temp registered 102 degrees so I gave him some Tylenol and tried to comfort him.  He was very, very uncomfortable and a little hard to console.  I already knew what the outcome of this fever would be because we've been in the hospital with each round of expansion.  I was mentally packing my bag for the hospital.  The next day, two horrible requests for Elmo...or cars...uh oh...  All he wanted to do was lay on his tummy with his little feet tucked up underneath him.

We went to visit our pediatrician who did a blood draw and a throat swab because his throat looked irritated.    Strep throat...positive....white blood cell count stay...positive.  So we checked in at John C. Lincoln that afternoon and expected to stay the night.  What we didn't stay THREE NIGHTS!!!  Jeesh!  We don't even stay in the hospital that long with our surgeries!
Day 1 - First sign of feeling better...surrounded by cars in the JCL playroom

Day 2 - Get me outta here or Elmo gets it!

Day 3 - What bed hair looks like after 3 nights in a hospital bed
Night one - Zac's fever just wouldn't budge.  Night two - another fever and a spiked temp in the afternoon.  I got a little freaked out then...I mean, I expected one night, but three.  On the second day, they changed Zac from an IV antibiotic to an oral one because his IV would get kinked if he moved in the slightest.  The nurse and/or aide would have to stand and hold his arm for 30 minutes while the IV finished up.  Night three - finally, no fever!  After three nights, we were itching to go...3 nights of plastic beds & pillows, constant streaming light through the door and nightly interruptions from nurses and aides.  This hospital doesn't serve food to parents and I didn't want to leave Zac's side for a second because I didn't want to give him any additional stress.  Thank goodness to good friends who came to my rescue (as Bruce was now home sick...) and brought me food and coffee and even some goodies for Zac including a handwritten book with pictures by Angelina, my friend Lisa's daughter - so adorable!!

On the last morning at the hospital, I was able to take Zac outside and we sat and watched cars for a bit..."bye bye truck"..."bye bye car" he would say.  My little guy is getting so big.  Things change in the blink of an eye...  On Saturday, it was in the mid-70's; On Sunday, 40 degrees!  Pea-sized hail fell hard in our backyard, turning our patio furniture an arctic white.  As the hail was falling, Zoie and I stood at the window and watched.  I looked at her and jokingly said, "You want to go out and make snow cones?"  Enthusiastically, she said, "Yes!!"  I laughed and told her I was joking and that although it would be fun, it wasn't a good idea for us to run out into the hail like we do the rain, because the little icy pieces would really hurt as they pelted us.  Funny thing is...she still wanted to do it.  Guess sometimes the pain is worth the joy :)

Friday, March 9, 2012

Ding ding ding...Round 3!

Resting in the hotel room.
I can hardly believe it has been 9 days since Zac's surgery.  We spent the night in the hospital since Zac's surgery was so late in the day and were released the following day before noon...right before a flurry of snow hit.  Zac was definitely more vocal about his level of pain this time and it was the first time I alternated Tylenol with Codeine and Motrin...usually regular Tylenol and Motrin are good enough.  I also woke him in the middle of the night to keep his doses up to keep his level of pain in check.  It was the first time he didn't bounce back right away.  Zac had two expanders placed.  A 750cc expander in the upper chest and a 1000cc tissue expander placed on the left side/back.  He had the remainder of two leg satellites removed and had a skin-tag type thing removed from his right ear.   Friday we just spent in the hotel room watching Elmo on repeat.  I got a text from Bruce that said...uh oh...and had a picture of Zoie....missing her front bottom tooth!!  Ugh!  Can't believe I missed that!  Oh well, guess the tooth fairy is bound to come a bunch more in the future...
Loving the Elmo DVD in the van
I have to tell you the amazing story that happened the day we arrived in Chicago.  I got to the Alamo car rental area ready to pick up my full-size car.  I was a little nervous, wishing I would've not been so cheap and gotten a small SUV instead because I was very uneasy about driving in snow.  Ok, uneasy is an understatement...I was freaked out!  When we were in Chicago last January, I made Merilee and my husband drive everywhere so I did not consider myself experienced in driving in that fluffy,
slippery stuff.  Anyhoo, upon exiting the shuttle at Alamo, I was informed they did not have my car available and would I like a mini-van.  WHAT!!  Uh...YEAH...I would LOVE a mini-van!!!  Seriously friends, three years ago I never would've dreamed those words would come out of my mouth but the thought of the comfort of something familiar in this VERY different place totally took over.

Randy, my Alamo angel drove over a beautiful mini-van.  It had gorgeous black leather seats with white stitching, automatic get the picture.  I was SO happy!  I told Randy how much I appreciated it.  I told  him I wanted him to know that my son was here to have surgery...and on my birthday none-the-less and that he absolutely made my trip.  Randy replied, "It wasn't me ma'am...this was God's doing.  There's a DVD player back there for when your son gets out of the hospital."  I could hardly believe that I got so lucky!  And a DVD player too!  Wow!  Well, let me tell you.  Randy was 100% right - God must've planned this because there were several times that weekend that the only way Zac was happy was by driving in the car, watching Elmo.  One morning I even drove thru the Starbucks drive-thru and sat in the parking lot just to keep him calm.  Randy & Elmo - two more very special people this week.

We were so happy to be home on Monday evening after a plane ride that seemed to last forever.  Zac is still toting two drains that will come out tomorrow after we do our first fill.  It's going to be a little different filling two expanders this time since we have only ever done one.  I am hoping a slow melt Popsicle and entertainment from his sister will do the trick.  Please pray for us in our attempts tomorrow.

On Wednesday, the Arizona Republic featured a very special story on Zac and his rare skin disorder (Thanks Betty!).  I hope this raises awareness and helps to educate people on Zac's many spots and the reason we choose to pursue removal of his Giant Congenital Nevus.  And if you found our blog from the article...welcome to our journey.  I hope that you will read our past posts and follow our story as it unfolds.

Friday, March 2, 2012's not just for shopping anymore!

We got the call on Wednesday night. Zac was scheduled for a 3 p.m. surgery. He has never had a late surgery before. He's always been up first. A 3 p.m. surgery can eat up until 7:30 a.m. and then after that...nothing but clear liquids until 1 p.m. We had to be at the hospital at 1:45. Unfortunately, the no milk after 7:30 rule definitely tipped Zac off. He knew what was going down and kept saying "Josh..." and "bye-bye". He had a total meltdown and it was all I could do to throw everything I thought I needed for the hospital into a bag and put him in the car. So my friends...what do you do when you have almost 4 hours until you have to be at the hospital and you have to keep your child's mind off of food. You do what any quick-thinking woman would head to Target. Yep...that's right. Target, the third happiest place on Earth (after Disneyland and Starbucks of course). I spent over 3 hours in Target, a lot of it in the toy aisle. It worked great to distract Zac and I even filled his prescription while I was there - they really should pay me for this free advertisment LOL.

When it was time to head to the hospital though, the fit started up again. When we got into the hospital room, it was unlike I had ever seen him before. You see, the wonderful thing about doing these surgeries so early is that these little ones won't remember much, if anything at all and usually, they don't have a clue what is happening. The trade off is...instead of getting easier each time, they get a little harder because children become more aware. Zac was screaming for his "jacket" and "hat" because to him that meant we were going bye-bye. The nurses were not shocked since they see this a lot I am sure, they kept asking me if I was okay and all I could think was..."do I have a choice??" Then it happened. I reached that point...that point where you can no longer hold back and I started to cry. I shut my eyes and said a short prayer for strength for me and peace for Zac. And it was answered with some anti-anxiety medication for Zac...and for me...God sent friends.

Just when I thought I reached the breaking point, there were Mim & Susan from Dr. Bauer's office there for nothing else but to give me support. I am sure that Christine had something to do with it because she was amazingly committed to making my birthday special. After Zac (and Tow Mater) went in for surgery. The nurses at pre-op presented me with a birthday brownie and Mim and Susan kept me distracted at the hospital cafeteria with great conversation and a bright pink and yellow box of chocolates. I am so grateful to those two women not only are they amazing medical professionals but they are phenomenal, compassionate ladies and I am so lucky to have them in my corner.

It seemed like only minutes after heading to the surgical waiting room that Dr. Bauer came in to tell me about Zac's surgery. Zac had a small skin tag removed from his right ear, removal of the rest of the two satellites on his left leg and two expanders placed. One expander on the top chest area that will hold 750cc of saline; One expander from the front, left abdomen diagonally across the side up to the shoulder that will hold 1000cc!! The biggest tissue expander we've had yet. We spent the night in the hospital because the surgery was so late in the day and had the same excellent care that I have come to expect from the hospital. While Zac stayed distracted watching Cars 2 and cuddling with Tow Mater and his musical seahorse, he managed to get the rest he needed and stayed comfortable. I even got my birthday cake - a very yummy mini-bunt cake with white frosting, sprinkles and an edible candle - courtesy of The Meltons ;)

We headed back to the hotel, took a nap and woke up to a flurry of snow!! Zac is resting well surrounded by a plethora of cars and watching Cars 2 on the iPad for the 15th time today. Please continue to pray that he has little pain and heals quickly. He is definitely vocalizing the pain more than he did previously...and that hurts mommy too. Thank you everyone for your overwhelming birthday wishes and prayers for Zac - that was the best birthday present ever!!!

I KEEM And Extreme Brain Freeze

Zac LOVES ice cream....or I KEEM as he calls it. There is something so joyful about watching him eat it. A simple pleasure that makes him so happy. Today I spent a wonderful day with my little man. We were able to make it in to see Dr. Bauer first thing in the morning which left us an entire day together. Dr. Bauer is going to do two tissue expanders this time. We have never had more than one... I am happy about that because it means we will produce more 'good' skin...and I am also a nervous wreck...because that means I will have to fill TWO expanders. Well...truth be told...I was a nervous wreck long before the moment Dr. B told me Zac would have two expanders.

Though none of Zac's surgeries have been easy to prepare for. I am not talking about the packing of course, but of the mental olympics that start to occur in your mind about two weeks prior. Don't let him get sick...make sure you get the pre-op physical done...what's it going to be like this time...where will the expanders go...oh my gosh, was that a sneeze?...what will be his reaction to the hospital...will I be able to hold it together... Well, you get the picture. Our two week sprint started with a cold & congestion. Every cough, sneeze and snot filled Kleenex had me feeling more anxiety than you can imagine. I mean, fully prepare for the travel and all of the things that go into scheduling the surgery only to have to cancel it because of illness!! Getting sick is NOT an option! Although it has been down to the wire, Zac has finally recovered from his cold and is ready for his close-up tomorrow at 3:00, right after his friend Josh.

So...yes, I let Zac have I KEEM for lunch. What the heck! It's the small things in life that really matter. And no matter how prepared you think you are, in the end, you just have to trust that God has got your back.