By the numbers

     In the last 3 days we've had 1 holiday (HAPPY EASTER!), 1 birthday boy who turned 11, 3 days of decreasing pain, 1 day of freedom (we escaped yesterday), our 1st outpatient PT and the close of our 1st week in Baltimore.
     1st on the list to address, our birthday boy.  We did our best to celebrate Zackary Titus no matter our location so he woke up to a room decorated by pictures, a balloon and the play area on the peds floor even gave him a present (the cute baseball blanket you'll be seeing a lot of in the future).  But if you ask him the best part was getting taco bell for dinner! Hey, when your boy requests a birthday dinner you make it happen. Here's a quick glance of some of the decorations he had....

     Zackary was born March 26, 2005 at 27 weeks! He made quite an entrance into the world at 1 lb 12 oz and was in the NICU for a very long 88 days. While he was there it was 2 steps forward and 1 step back though most days it felt like 5 steps back followed by another 2 backwards.  Around the beginning of May we found a staph infection that effected his right elbow, left hip and left ring finger.  It's way more complicated then I care to explain or remember but long story short the staph infection ate away all of his hip joint and femur head on his left side.  Around the age of 2/3 he began reconstruction of the hip and after 19 surgeries before the age of 4 it was looking promising.  But low and behold after his last step of reconstruction the staph infection reappeared and ruined all the progress the doctors had made.  11 years later his leg length difference is at 8cm and grows a little bit each day.

     So our miracle baby is now 5 feet tall and well over 100 lbs! We are so proud of all he has conquered in life and was not surprised at all when we took being in the hospital for his birthday with a grain of salt.  Just to get a perspective here's some 'then and now' photos of him the week his born and this hospital trip.  Yes, that is the same little green alligator in both photos on the left!

                   

       Yesterday was a double day of celebrating; the resurrection of the Jesus and the freedom from Sinai hospital, or at least the ability to go across the street to our 'house'.  Zackary's pain was manageable enough and he proved to the doctors that he was ready to go home.  They cleaned and put on new dressing on the surgery sites (7 incisions), did great at PT and continued to eat like the Zacky we know and love.  By 2pm we were settled into bed and we all enjoyed a nice uninterrupted nap and woke up to FaceTime with my family.  What's not to celebrate?!?!  

      Today we also took an adventure back to the hospital, a new daily task, and had our first PT appointment.  It was more of an evaluation to see the starting point of range of motion and prepared us for the weeks and months to come.  In the next 12 days we have 11 appointments outside of the house, 14 at home PT times scheduled and starting the active leg lengthening procedure tomorrow will be a 4 times daily event.  Pain is still very much an issue for Zackary (we were told it only should last up to 2 weeks) and then he will be more active and smiley.  So needless to say we aren't up playing or coloring yet but we see a bit more sunshine out of him every day, no matter how many days its raining outside...we all know how much I love rain :-(  And in case you needed to know, here's Zackary's style for the next few weeks!

     

Until next time~

Momma Miller

PS thanks again for the prayers and good wishes! We feel them (and need them) every day!!

Ready To Wait

     What an 36 hours it has been.  I hope everyone has been somewhat updated by our family members or my instagram account, but now you get all the fun details!
     Yesterday we showed up at the hospital at 7:15am and was told we would be shooting for a surgery time of 9am though we knew there was one surgery ahead of us.  So after waiting in the waiting room for almost 2 hours they finally took us to the pre-op room.  Zackary loved all the attention and cool outfit and there we sat for another 2 hour.  Good news though, they got his IV in on one shot, something that has never happened before.  Despite the waiting we learned what an amazing staff this hospital has which put us at ease as parents and for Zackary as a patient.

     Once they finally came in and marked to correct leg to do surgery on (one thing you don't want to get messed up!) they gave him the 'happy juice' and before we knew it he was laughing, forgetting and then being swept away to surgery.  I stood there as the doors closed and the doctors and nurses nonchalantly said "he'll be fine.  We'll be out before you know it."  Excuse me?! Can you look a mother in the face and believe that you're telling them that it'll be fine? As of right now my son is in your hands, it's your job to keep him alive! Needless to say more then a few tears were shed and there the three of us were, waiting yet again.
     During our wait they sent us off to a meeting to learn about the new tools we'll be using for his lengthening process, grabbed some lunch and even watched a movie.  May I suggest NEVER watching Armeggedon when you are on an emotional rollercoaster? Yes, those shedding tears came back more then once! After 3+ hours of impatiently waiting for them to call case #2689 I was tempted to yell BINGO when they finally announced it and I was able to go around the corner to see the doctor with a smile on his face confirming that it went 'perfectly' and there were no complications.  But then I was a bit deflated when he said we had to wait another 30-60 minutes before they would let us go back to see him.  I needed to hug my baby!

     I walked in to this angelic face after 4 hours of seperation and I couldn't help but kiss, hug and hold the adorable hand of my brave child.  All was right in the world and I knew our family was going to be okay.  (Yes a bit dramatic but that's truly how I felt).  The docs came by and checked him out as he snored away.  They tried to tell us that we'd be in a room within an hour even though we told them he's never been less then 3 hours in recovery.  About an hour passed and the resident came and listened to him snore like a freight train, wondering how long he'd be asleep.  We knew, and the nurse quickly learned that even though this big boy is lying in front of you he still has preemie lungs.  Guess what we did for 5 hours?! yep, waited! Waited for him to wake up, waited for him to move his toes, waited for his pain to go away and waited for him to get a room.
     After 13 hours we finally rolled into the peds unit and couldn't believe the nice huge private room we had and how sweet his new nurse was.  It was a bit of a rough night with vomiting, 4am blood draws and learning how to manage pain but we made it!
      This morning Zackary informed me that there was no more sleeping at 6am (4am NM time!) and we started our day.  Adam and Johnny stayed the night at the Hackerman-Patts house (HP house) so they got more sleep but adam was in the room by 8am making sure not to miss any visiting doctors or specialists.
     Today started slow but positive.  All his blood work came out good, he had started to hold down fluids and even took a few bites of breakfast.  He continued his pain meds on a PCA (pain med pump hooked up to his IV), got multiple doses of antibiotics but was still pretty groggy.
Believe it or not, less then 24 hours after surgery he was already in PT (physical therapy).  They came in and had him bending his leg, very minimally, and even got him into a wheelchair where he got to sit for a few hours.  It all looked extremely painful to me but Zacky sure was a trooper.
     As the day progressed so did Zackary.  Pain meds were being used less and vitals kept growing stronger.  He became more lively and even ate a whole lunch.  I'm thinking pizza should've been his first meal and we wouldn't have had any problems ;-p He has also, in the last hour,  been taken completely off his pain and liquid IV and is taking all meds orally and ate dinner in no time! (omelettes for the win this time)  And my favorite progress of the night was I finally got a smile from my baby, something I've been waiting for for these last 18+ hours but boy was he worth the wait!

     He's still not 100% out of the woods yet and the next few months are going to have it's ups and downs but here's some things we do know and always could use prayer about:

• He is still not cleared from the possibilities of Staph infections until 6-8 weeks post op
• He will have 50-80 days of active lengthening starting middle of next week
• He is scheduled to be released on Easter Sunday

     There will be more to come on lengthening details and PT successes but for now I think I've bombarded you enough with info.  Plus you know there will be a birthday boy post tomorrow about my brave, strong, inspirational and amazing son!

Until next time~

Momma Miller

Leavin' on a jet plane!

     All of the packing, planning and progress has led us to today...starting in New Mexico and ending in Maryland.  If you ask Johnathan the highlight was seeing the Ravens stadium, Adam's opinion was how everything is so green, mine was that we didn't forget anything and Zackary is stoked about the ping pong table!  Needless to say we are looking at today as a complete success.
     We spent last night packing until 3:20am (and only stopped because our ride to the airport showed up).  We all enjoyed a 3 1/2 hour long nap on the direct flight to Baltimore and headed to our new "home away from home".  This is how the Hackerman-Patz House describes themselves.  So far we have found a lot of nice things.  Our room has a mini kitchen with fridge and even has a closet big enough for most of my clothes! The commons area has ping pong, a big TV and an xbox.  The location is amazing, we are directly next door to the hospital but don't feel connected to the stigma that is hospital living.
     I know a few people have been asking about the address of the home and it is:
Hackerman Patz House
2434 W Belvedere Ave
Baltimore, MD 21215
      Let me take a quick moment to say a huge THANK YOU to all who have donated to Zackary.  It is a huge weight off our shoulder and we were able to pay for the first few weeks of the home without concern.  In addition, the prayers and good vibes are what have kept us focused and safe up until now, so thank you thank you thank you!!!  I'll let everyone know about pre-op and surgery over the next few days.

Until then~
Momma Miller

PS~ check out the boys visiting the cockpit after we landed in Baltimore!

                                      

If I said yes, would you believe me?

    This seems to be my go to answer when anyone asks if I'm ready for the trip or if Zackary is doing okay with it all or if I'm excited to be in Baltimore for a long time or my personal favorite, have you gotten everything done in order to leave? Ummmmmm, no!  First off if you've ever met me you what a great procrastinator I am and I still have 3 full days left thank you very much.  And to be honest, I don't think you can ever be ready (I will forget something no matter how many lists I make) or excited to be away from your family or be a 10 year old ready to go into surgery, again.  I know people are only asking to make conversation and out of love but understand that my answer will always be the same...If I said yes, would you believe me?

     But in case you wanted to know the truth here it is; I'm ready as can be (I do have a ton of lists that have me scheduled from now until the minute we take off), Zackary is actually excited to "get knocked out like in tv" (he was too young to remember from his other surgeries that it's not that grand) but isn't looking forward to the pain or PT, I'm excited to make the best of our time while we are out there in a new area, and I have gotten done all I can and trust that God will give me the time and energy to get done everything that needs to get done (and what didn't wasn't that important).

     A quick update medically speaking: Zackary has been on and will continue to be on a pretreatment of antibiotics up until the day of the surgery to ward off any infections that could possibly be in his system at the time of surgery.  He has had blood work and a physical here in Albuquerque, both of which came out great and gave him clearance to have the surgery.  All of his 'toys' (crutches, wheel chair and PT stuff) has been ordered and will be awaiting him in Baltimore.  We leave Tuesday at 5 am and then on Wednesday he has his pre-op for final approval for take off on Thursday.

     As parents we have double and triple checked all reservations and confirmations, got the rental car for the first few weeks figured out, received new luggage thanks to my in-laws so we have large suitcases to fit all of our (okay mostly my) clothes, we've set up dog sitters, lawn mowers, contacted teachers for Johnny and have smiled numerous times knowing no matter how crazy this gets we'll make it through! We have our trust is God and some amazing support systems here on Earth and I know if it wasn't for each and every one of them this wouldn't be possible, so thank you!

    So as far as right this moment, yes we are as ready as we will ever be! I will now leave you with a few photos of the tough guy on blood drawing day.  They had to do both arms because his vein on the first arm sort of colapsed and couldn't provide enough blood for the 8 tubes he needed!

Until next time~

Momma Miller

                                      

Houston, we have a problem

We might not be the NASA center over here in Rio Rancho, NM but trying to orchestrate a surgery across the country can definitely make you think that way from time to time.  

Last summer we spent 2 weeks in a car driving around the good ol’ US of A visiting mutlitple doctors and trying to find the perfect match for Zackary’s next round of surgeries.  We ended up connecting with Dr Hertzenberg in Baltimore and agreed with the first step of leg lengthening to occur this year while growth plates and a whole lot of other little details lined up perfectly.  So, about 7 months ago we sat down as a family and decided spring break would be the best time to have it done so Johnathan wouldn’t miss any part of his first year in high school and Adam would miss minimal work being gone for a whole week.  Well, all was going according to plan and flights were booked for the surgery to take place on March 29th, giving us the weekend of Zackary’s birthday (26th) at home and able to party like any newly 11 year old would party before heading to the airport on Sunday. Sounds perfect right? Well, as ‘perfect’ as any major surgery, and #20 surgery for my brave little boy, can go.  

Then came the email…”we are sorry to let you know but the doctor will be out of town the week we have Zackarys surgery scheduled.  Here’s the other dates we can switch it to…” Ummmmmmmmm, do they know all that goes into traveling over 1,600 miles for a 4 month stay?! But if you’ve ever tried to deal with anything medical  you know you are at the mercy of the doctor, so we’ve spent the last week changing flights, forewarning teachers, praying and taking a week off our prep time.  We have settled on the surgery date of March 24th, which puts us leaving NM on the 22nd and sadly, Zackary having to spend his birthday in the hospital.  

We know it could be worse and our situation is nothing compared to what some families have to face, so please don’t ever think we don’t recognize our blessings, it’s just frustrating when plans don’t go the way you, well, planned them.  I will continue to update about the surgery and recovery here, so keep an eye out.  I also know I’ve left out a lot of details when it comes to Zackary but those posts will come as well, I just needed to get out the time sensitive changes to family and friends.  

Thank you for taking the time to read, comment, pray and stay updated, the Millers appreciate it greatly!  Also, if you have the time and feel so inclined, please hop over to the Gofundme account my mom has set up for the medical, travel and living expenses that we will incur over the next 4-5 months,  Thank you in advance for your contribution. GoFundMe.com/49n9sgac

With Love~

Momma Miller