More Changes

Hello all, 

Yesterday we had our first post-op appointment since surgery on 7/10 and overall it was good news. First and foremost he let us know we could go home! We've only been here just short of 3 weeks and we're already going home, this is new! Exciting for us and we are definitely ready so Adam is flying in tonight (Friday) and we are hitting the road tomorrow morning. We will take a couple days to get home, it's about 28 hours of drive time but expect a lot of small steps to let Zackary stretch and re-adjust. Wish us safe travels please!

When it comes to Zackary's healing the doctor was not over the top excited but says he's doing fine. His range of motion and flexibility is in a good place, and we will continue PT 2-3 times a week for the next 8 weeks at home. His first x-ray did not show any bone growth though. Not 100% surprised since it's only been 2 weeks but a little bit would have been nice. He let us know that this means he will keep Zackary at 0% weight bearing and toe-touch rules for standing. This was disappointing for Zackary because he knows that means still all wheelchair and walker, no crutches or stairs yet. A fun feat to handle when we are going home to a two story house. The doctor said he only wants to do x-rays once a month and will not increase weight bearing until he sees visible growth. We will most likely fly back to Baltimore for the appointments as Dr H likes to watch him walk, movement or ability once we get orders.

The doctor said he expects Zackary to be walking on his own in 2-3 months. Our goal now is for him to be up and walking on his own to help with the fan and cards come Balloon Fiesta, our favorite time! The doctor also let Zackary know that he was cleared to go to school, just with assistance and of course in the wheel chair. Zackary was happy to hear he gets to go, but not the wheelchair part. But ready or not he's a freshman in high school in just a few short weeks!

Lots of changes are the only way to explain this process and this whole summer but know we are always ready because we know God only gives us as much as He know we can handle. Thank you to all who have supported us up to this point. Please know your emotional support has helped our well being and your financial support has gone towards doctors bills, airfare, room, food, hotels and gas for driving home and so much more and more to come so again, thank you! 

Until Next Time, 

Momma Miller

           

The Good, The Bad, The Ugly

Hello again,
I will start off by saying I'm sorry for not getting an update to you sooner. It's been quite a busy few weeks and want to thank everyone who has reached out to check on us and all of those who have donated to the GoFundMe and sent prayers our way, it has all truly helped us each moment. As the title states there's been a lot of things happening and it's so much I think it will be easier to just list out. As much as I'd love to give you a play by play and everything behind it there is just too much, I'd be writing for hours and you'd be reading for days! So here's the highlights:

THE UGLY:
The Tahoe made it over 2,300 miles to get us here but as we pulled into Baltimore it started making extreme noises and barely gave us a quick trip to Walmart and one last meal before surgery. We had to drop it off to the mechanic the night before surgery and it was at the shop for over a week. Luckily they were very helpful and were able to get a new transfer case. As the mechanic stated, he had no idea how we made it into town as there were many destroyed belts, broken transfer case, loose chain, etc. Let's just say I prayed since the day we left ABQ that the Tahoe would get us safely to Baltimore, God did just that...nothing more, nothing less!

THE BAD:
After surgery Zackary did well with recovery the first couple of days. We were expected to stay in the hospital 2-3 nights, and usually only stay 2 nights. This time he took a rough turn on day 3 and we ended up having to go from almost going home (the HP House) to getting hooked back up to the IV's for fluids because he wasn't eating or drinking and slept almost all day, and was in lots of pain when he was awake. They tested and kept an eye out for infection but everything came back clear. He apparently just needed a couple extra days to recover enough to be on his own and we went back to the HP House on Sunday, 5 days after surgery. It was a long week but we are so lucky to have such great nurses and doctors that don't push anything and did nothing but keep his best interest in the fore front.

THE GOOD:
Ok, so the good is good-ish...I think. As we discussed in the last blog the surgery we were expecting to have was huge, lots of pain, hard recovery and long stay. We met with the doctor on Monday for pre-op and he reiterated all we knew. Dr. H was thankful we could stay here as long as needed but had extended our expected stay from 6-8 weeks to minimum 8-10 weeks. He also let us know the external fixator would be on for a total of 8-9 months, not the 4-6 they had explained over email. This is not the good news, but of course I don't know how to spare the back story, and it couldn't be in the bad category because it didn't actually happen...yeah, there's the good news coming.

Well, surgery day came and Dr. H came in as he always does but instead of marking up Zackary's leg and giving us the 'it's all going to be okay' speech he spent 30 minutes talking to Adam and I about how he had been thinking non stop about Zackary since Monday and just didn't feel good about doing this huge, painful surgery on Zackary. Always great to hear from the doctor...not! Well he let us know there was a different 2 stage surgery he did research on and felt comfortable recommending it for Zackary. And as we always ask the doctor, if it was your kid what would you do? And he said he'd do the new one. Well, he left us alone for about 30 minutes as we took time to explain things to Zackary and then he came back and talked with all of us for another 45 minutes going over pros and cons.

We settled on the new surgery and though the lengthening process cannot be done yet, he has to be done growing in his knee growth plate, we were able to do the hip reconstruction step. It's the same 'Z' process as expected and he ended up putting in 2 plates and 8 screws. This has to heal and when we come back for the lengthening process it will be exactly the same as 2016 with the internal rod and less pain, but a rather long recovery. We will also have to remove the bottom two screws in order for the rod to fit. So, though we will not have the extensive stay or extremely painful recovery as expected we have added another surgery within the next year which will include another long stay out here in Baltimore.

He is now recovering well in the HP house and we are both happy to have a little bit more space and a car to get away from Grub Hub, I actually cooked sloppy joes tonight! He has PT 3 times a week and a post op appointment on 7/25. We had multiple doctors tell us we could go home in anywhere from 3-6 weeks, so there is a chance we will be home way before we ever expected! He will have to complete healing and PT at home as expected. He has 'toe touch' permission and is getting short distances (to the bathroom, max) with a walker and has ventured out for Adam's bday dinner, which exhausted him but it was worth it. He will hopefully be on crutches by the time we get home and should be walking on his own within a few weeks of when school starts!

I told you there was a lot! For now, he and I are enjoying as much as possible out here. Lots of movies, board games and phone games from bed. Still quite a bit of napping and healing for him, and still work happening for me. He's still on strong pain meds but is weaning now. We're hoping to make it out to a movie this weekend, big goals!

As I stated before, thank you for all the well wishes, prayers, and donations. All of the support always blows my mind. You all are amazing. Thanks for keeping with me until the end of this. Maybe this will teach me to wait so long between posts!

Until Next Time,
Momma Miller

Hey I remember you!

"Hey I remember you!" I said as I answered the phone at 8:30am on a Monday. "Hey I remember you!" I was told as I booked our room in a far away place. Hey I remember you...but I sure wish we didn't- didn't have to answer that call, didn't have to book that room, didn't have to be sitting here writing you letting you know about Zackary's newest adventure.
Did you know it's been 408 days since May 16, 2018? That is if you're one of the few reading this on the actual day I posted this (6/25/19). It's has been a very full, exciting, roller coaster of a ride life the last 408 days but I'm sure everyone has had their ups and downs. When it comes to Zackary it has been filled with 408 days without surgery, it was the completion on not one but 3 basketball seasons, the start of public school and ending his 8th grade year with honor roll and being awarded the power of positive thinking award at school. For Johnathan it included his final year of football at Rio Rancho High School, the signing of his letter of intent to play football in college, his graduation from said school and the dropping off of said college student at his new home in Seward, NE where he will be playing quarterback as a Bulldog. Adam and I have both moved industries at work. Though he's still working for General Mills we also joined with an amazing financial advising company named Gateway where Adam has interned and passed multiple tests and is now a licensed financial and insurance advisor. For me, I'm the administrative assistant to a group of advisors and we both love our roles over there. To say the least the last 408 have been anything but dull, but now that you are caught up let me fill you in on what is going on currently.
That phone call I mentioned earlier that I took at 8:30 was from the scheduler of surgeries for Dr. Herzenberg out in Baltimore. I hadn't even heard from the doctor we needed surgery yet, but the scheduler was bright eyed and bushy tailed to do his job. Devin is so helpful and friendly that it took me a couple minutes to realize what he was asking. "Dr H wanted me to reach out and put Zackary on the schedule." "For what?" I asked. He asked me to check my email and there I found that the doctor was concerned about Zackary's latest xray and the amount of daily pain he was in.
We get xrays about once a year to keep an eye on things and usually they just attribute pain to him being an active, growing boy who doesn't have all the normal functions of a regular kid. Basically just learning and adapting which can put a toll on his body. But not this time, this time they were concerned about the 'migration' of his hip and how much movement there has been in his leg and honestly concerned about how much he's growing! A somewhat good concern to have since they told us we would be lucky if he maxes out at 5'8" (He's almost 5'8" now, matching where his brother was to the cm at his age, and Johnathan is now 6'2"!)
Well, they were concerned enough to call us and ask to schedule his next stage of surgery within 5 weeks! When the doctor makes strong suggestions you listen! We went back in our notes from past consultations all mentioning how he would need the surgery around 15/16 and it would be another big one. We knew it was coming but damn if that didn't come faster then any one of us could have imagined and of course it came early, he's only 14, but again with the growing and migrating.
I'll save you all the medical jargon and details and just tell you this; Zackary will be having surgery on July 10th in Baltimore, Maryland at the Sinai Hospital. This is the same place his leg lengthening procedure was in 2017 and where he and I get to spend 6-8 weeks while he heals from this surgery. He will be having a complete hip reconstructive surgery, breaking it in 2-3 places to create a shelf like hip out of his already existing femur and since he will be losing so much length from that they will be doing another leg lengthening procedure at the same time. Unfortunately he is not as lucky as last time to be able to do the internal rod for lengthening, we will have to do the external fixator. This is the halo type apparatus you may have seen that has pins going directly into the leg, connecting to the bone and separating the bone to create the length and regrowth. This is a very painful procedure, long term process and healing process.
His recovery will be 6-8 weeks of lengthening, in Baltimore, to include weekly doctor visits and daily PT. Then he will have another 2-3 months at home, though there may not be any lengthening, he will still continue PT for a total of at least 4 months of no walking. Even though we've been through it before it's never easy, it's always scary and you can never be prepared enough.
But hey, remember that awesome company Gateway I was telling you about? They are letting me work remotely while he recovers and of course Adam will do his best to make it out for a few visits and hold the fort, and puppies, down here at home. Johnathan...well, he'll still be annoying his brother via phone just from Nebraska instead of New Mexico. And what could we ask for from you? Mostly and most importantly prayers. For each of us in our own ways of needing it, for the doctors, for the safe travels as we drive to Baltimore, for sanity, for patience, understanding, all the good stuff! I will let you know our GoFundMe account is still up and running and we could use all the help you can provide and thank you in advance for your help. We have a little saved from the last round of surgeries to help fly Adam home to work after surgery but of course food, housing and medical bills add up quickly, so thank you.
Thank you from the bottom of my heart for all the past, present and current support. We would not have made it this far without you. And thank you for sticking around to read this whole long blog! I mentioned somewhere I'd spare you the details...maybe next time!

Until then~
Momma Miller