What a week...and it’s only Wednesday

Hello all,

I come to you from the Hackerman-Patz House, our home away from home. As I sit here watching it rain yet again, a daily thing here, I realize that’s the worst thing that’s happened this week! It’s been a long week for sure but overall it’s going okay. Sunday was Mother’s Day of course, happy Mother’s Day to all you amazing super hero’s raising kiddos! We went from camping in the morning to home to pack and on the plane in enough time to be in Baltimore for a late dinner. Minus a little turbulence everything went smoothly. 

Monday brought our pre-op appointment with Dr. Herzenberg. We took a ton of X-rays and talked for almost an hour in total. The X-rays were taken to see growth plates, current leg length discrepancies, and to check the rod that was in his leg.  We then sat down and talked with the doctor and left feeling confident that we’ve set up a good plan for Zackary. He said due to nerves and muscles that run from the hip down toward the knee, Zackary complaining of pain in his lower femur could actually be displaced hip pain and he had hope that removing the rod would stop most if not all of the pain. He also said he’d be giving him a cortisone shot in his hip, when taking out the rod, to help with pain management. He confirmed as well that the bone looked dense enough for there to be no concern of removing the rod and Zackary being the active boy we know he wants to be with a little bit of PT. 

Once we decided what was going to happen this week we moved on to what the next few years looks like. He talked about different options, I won’t go into great detail and bore you but there’s options of internal and external hip reconstruction surgery. Each has pros and cons but after consulting with the dr and Zackary we’ve decided internal will most likely be the route we will take. Looking back at the X-rays again and taking measurements in addition to knowing Zackary will lose some length in the hip reconstruction the dr let us know we will have to do another round of leg lengthening before we even begin the hip osteotomy. It was always a possibility but he made it very clear that it’ll be a must now, but only for about half the length as last time. Looking at his growth plates and estimation of natural stopping point of growing at the age of 15 it was decided that the leg lengthening will happen in 2020 and the hip osteotomy to happen in 2021 once the lengthening procedure has healed. He let us know we can continue to cortisone shots to help with pain if the rod removal doesn’t help enough and that he has a doctor he trusts to give the shots in the Phoenix area! 6 hours from home seems like a hop, skip and jump compared to here! So that was some encouraging news too. 

Tuesday morning came all to quickly after a late night at our annual Olive Garden pre surgery dinner. We made it to the hospital around 9:30am with 11:30 surgery time scheduled. After being taken back to triage the first doctor let us know the surgery had been bumped to 11:45. Then we finally saw Dr. Herzenberg about 12:15 and he said hopefully before 1pm. Then about 1:20 they came in and took Zackary back. He was a trooper like always only complaining about being starving every few minutes. A fair statement since he hadn’t eaten in over 12 hours. They gave him his ‘happy juice’ cocktail and before we knew it he was loopy and we were giving our good bye kisses. One hour later Dr H came out and let us know the rod came out very smoothly, he had it in hand since Zackary requested to keep it. He also let us know he did the cortisone shot in the hip and a couple other shots of pain management in his leg that should last awhile. This made the momma in me very happy, I hate seeing him in pain. An hour after that we were able to sit by his side in recovery while he woke up and before leaving the hospital, though very drowsy, he was already taking steps to and from the bathroom! He spent the rest of the day sleeping at the HP house and spent the whole night eating once he woke up! 

Today has included eating more, playing video games, watching tv and playing ping pong! Yes, playing ping pong, with no assistance! He’s walking everywhere with no pain or crutches. I’m keeping him on Tylenol and asking him to take it easy but if anyone knows him you know nothing slows him down! We’re very lucky with how smoothly has gone the last couple of days! We will stay here a couple more days just to keep an eye on the incisions and make sure he’s healing well before heading home on Friday. Thank you to everyone who’s helped on this trip with prayers, finances, good thoughts, texts and calls. They all, and you all, mean so much to us. Thank you!!!

Until next time-

Momma Miller 

A Rough Start to Mother’s Day week

And the award for greatest mom goes to...any one but me. When you’re a mom of a child with special needs it doesn’t take long to never notice the difference in day to day life. I don’t see the limp, or get surprised by the constant request for Tylenol or warm baths. I don’t second guess taking breaks while walking long distances with him or ever forget which direction the wheelchair and walker fit in best in the trunk. Heck I’ve even gotten real good at ignoring all the medical bills that seem to constantly fill our mailbox! Life is what it is, you never question you just adapt and move on, do your best. Then there are those moments when reality sets in. You catch yourself sitting on your teenagers bed (yes he’s 13 now!) rubbing his back as he sobs asking why. Why another surgery? Why him? Why did he have to be born preemie and get sick? Why can’t he be a normal kid like everyone else? Why has he missed his last 3 big birthday plans because of surgery or pain? Why can’t it stop? And that’s when I realize I’ve lost the worlds greatest mom award. I don’t know why, I can’t fix it and I can’t make it go away. Life sucks and it’s okay to cry. That’s about all this mom can come up with as I cry right along side of him.

The tears I speak of began today, Monday, this after waiting over 2 weeks to hear from the doctor on a reading of Zackary’s last X-rays. When I last updated you all Zackary was having horrible pains in his left leg right about where the rod ended in his femur. The doctor diagnosed an unseen stress fracture. This is common in kids with the rod placement and he had told Zackary little to no weight bearing for 4-6 weeks with a follow up X-ray. He let us know we could always see the healing of the stress fracture on an X-ray even if you couldn’t see the original fracture. He also said the pain would go away as it healed, just like any other break on someone else. Well Zackary impatiently waited for the 6 week mark only forgetting a few days in between that he was suppose to be using crutches and his walker to get around. Well the day finally came and he started walking, only to find about 12 hours later he was in so much pain he put himself back on the crutches. This was not a good sign. He went back and forth between weight bearing and not with still a lot of pain while we waited for the X-ray results and we finally got word back today. 

The X-ray didn’t show any fracture, healed or not. The doctor immediately requested rod removal and contributed all the pain to the rod still being in there and his overall hip/leg issues. This means he will be having the rod removed on Tuesday May 15th, yep a week from tomorrow, in Baltimore. We will also have our pre op appointment on Monday where the doctor has requested we discuss the hip osteotomy potential after having many X-rays and other tests run to see if the lack of hip and other bone issues are the cause of the pain. This is the main, big surgery we’ve always known was coming around age 15-17 but could now potentially be a lot earlier. As we know with all things medical anything could happen at any time but at this point our main focus is to relieve as much pain as possible for Zackary so maybe the days of needing elevation, heat, daily Tylenol and warm baths will be fewer and far between as compared to the almost daily struggle they have become over the last 3-6 months. 

So I may not be the greatest mom but I know I’m trying. I may not have all the answers but I know we’ve got him the best doctors possible. I may not know why all this happened to such an amazing, loving, incredible kid but I know my God has big plans for him! So, while you read this go hug your kiddos and remind them life sucks sometimes but it’s okay to cry. With that said I will gladly take the title of worlds okayest mom because I’m doing my best and that’s all us moms can do! 

I will update you all next week once we’ve talked to the doctor and we have more information. Until then, thank you to everyone for your continued support. This is definitely an unexpected, and costly, last minute trip so if you wanted to check out our GoFundMe page again please know all money will go toward hotel, food, medical bills, etc. Thank you in advance for your love, support, well wishes, positive thoughts and prayers. This okay mom could really use them. 

Until next time~

Momma Miller 

The Not So Joyous Side of Parenthood

Do you know what it’s like to not be able to guarantee your kid that this plan the doctor has will make the pain go away? Or not be able to promise him no chance of surgery if we do this treatment? Or how about not even being able to give him the answers he deserves or even a time frame of when we can get answers?
As a parent your number one job is to protect and love your child by any means necessary and I would take a bullet for him an an instant! Yet here I sit in tears because I am just as helpless as he is. I can’t help him. I can’t give him answers. I can’t make promises. I can’t protect him from the pain.
Now you’re probably asking yourself what I’m crying over right? Well Zackary has been complaining of pain in his lower left femur for the last 2 weeks. This is the leg where the leg lengthening was done and the rod is still placed in. At first we thought it was usual soreness from pushing himself to the max by the end of the basketball season, yes he just finished his 9 week basketball season and did awesome in every game! Then maybe we thought it was from all the weather and pressure change here in the ‘desert’, we’ve worn flip flops and shorts one day and beanies the next with days of rain to boot! But after a week of pain that pushed him to Tylenol multiple times a day with heating pads and warm baths whenever available we knew we had to reach out to his doctor in Baltimore. Zackary is saying his pain is at a 4 out of 10 most days. For comparison this child has the highest pain tolerance I’ve ever seen and usually puts day of/after surgery a 5-6 out of 10 and he hasn’t taken pain meds since coming home from Baltimore even when snowboarding or pushing himself to the max doing boy things.
So once we reached out to the doctor they requested blood work and X-rays just to make sure there was no infection but of course with back and forth via email with doctors it takes a few days and then it was close to the weekend and with our hectic schedules we barely got it done yesterday. Well when I let them know it had been complete and the pain was still there they insisted to put him on crutches and walker to reduce weight bearing to max 20%, preferably none on the left leg in case there is a possible fracture since the original guess of infection shouldn’t have been this long lasting nor had it shown any infection like symptoms (fever, swelling, etc).
Now here I sit just having told happy go lucky and as active as ever Zackary that he has to be put back on the walker he loathed for so long just a few years ago. He asked if this would heal him, I don’t know. He asked if this would prevent us from having to go to Baltimore, I don’t know. He asked if this meant he was going to need surgery, I don’t know. He asked when we’d have answers, I don’t know. The doctor will have the X-rays by Monday but he’s taken up to a week to read them and get back to us in the past, so maybe 2 weeks, I don’t know. The hardest thing as a parent to tell your child is I don’t know and I can’t fix it. As much as I would give my own life to fix this I just can’t.
You may be asking why I even tell anyone about this if we don’t know anything yet and my first answer is I don’t know. LOL But secondly I know it’s because you guys have been there the whole journey and if one prayer or good thought or positive vibe changes this all into nothing for him then I want everyone together to have been a part of that. So please, pray, encourage and think positively for Zackary. The most important thing right now is to get answers. Whether it be a need for surgery or meds or anything we just want answers. I want the pain to go away. Of course if it turns into anything I will update you all ASAP but for now thank you. Thank you for sticking by our side, for listening, for reading and for hoping for the best for Zackary Titus!

          Until next time~
          Momma Miller