Friday, August 4, 2017

Hello from 30,000 feet!

Zackary and I have trekked through the Baltimore airport, looking more like a vagabond then I care to admit, but made it onto the plane and are officially headed home. The last 36 hours since chatting with you has included two movies, getting out of the hospital, some delicious chocolate cake, the first NFL game of the season, pain management and lots of sleep for Zackary!

Specifically for Zackary he’s kept up on pain meds to stay ahead of the pain until we make it back home per the doctor’s order. He is usually on Tylenol as needed at this point but there is a lot of moving, standing, swelling and more pain then expected so we are playing it safe. The knee area surgery is officially the worst we’ve encountered to date! We have been icing the knee and trying to stand for bathroom breaks and things of that nature but overall are taking it very slow.

Once we get home he will have physical therapy 3 times a week for about 3-4 weeks depending on progression. His biggest struggle is balancing and bearing all his weight on the leg that didn’t have surgery this time, which is his left leg. Believe it or not his left leg is still not fulling healed from last year’s leg lengthening surgery. Before he referred to his legs as the good and bad leg and now it’s his good/bad leg and bad/good leg. Needless to say he is having a rough time and is feeling defeated and frustrated whenever he tries to move, another new thing we are not use to experiencing with our happy go lucky Zackary. The doctor also said he will be wheelchair bound most of the time and using crutches VERY short distances (few steps each day) over the next week. After that he will wean himself onto the crutches and eventually off them within a week or two. Should be walking fine in a couple weeks and rough housing again in 4-6 weeks.

At this point I would like to take a minute to bring up our GoFundMe account. This has truly been a life saver. Every dollar has gone directly to Zackary and his medical events. All the money we raised last year was more than Adam and I could ever imagined! We went into the whole year blind and faithful last year and you all supported with the exact amount we needed. We covered every expense that came our way with being in Baltimore for 5 months, short of medical bills that we are slowly paying off. We were even able to save a little to help with his surgery early this year and the surgery he just had so we didn’t take a huge hit in our daily finances. Yep, there’s been 3 surgeries in 16 months for him! With that said we have noticed a few new donations and want to thank you all so much for continuing to help. Medical bills are always the lingering effect of these situations and any and all donations are more than appreciated. There continues to be checkups, x-rays, medicines, well checks and future events that are in the pipeline in addition to paying off the last of the current trip we are on. With that said, should you feel the want to help we are always, ALWAYS beyond grateful! Thank you for all you do for us and reading these silly blogs that take my mind off of things for just a few minutes. Form our family to yours, thank you!

Until next time-

Momma Miller

Wednesday, August 2, 2017

The ending of another day and another surgery

We're closing in on the end of another day of surgery for our strong boy Zackary! 

After a very long 3 1/2 hour wait he was taken back for what was suppose to be a 'quick operation' in the words of Dr Herzenberg. I was told it would be about an hour to an hour and 15 minutes. So once we passed an hour and half of waiting every minute was a new level of mom worry. After 2 1/2 hours I finally saw the doctor and he let me know everything was fine! What a relief, but really? Does he know all the new grey hairs he just created?! 

So what happened in that few hours? The following... they completely restricted the tibia growth plate on his right leg. This is permanent and will have him lose an estimated 2cm of height on the right leg. On the ride side femur the did a temporary restriction.  Instead of destroying the growth plate they put in two 'eight plates', one on each side. These are plates that restrict the growth so long as they are in place. We are going to monitor the difference change with X-rays every 6-12 months and once we expect only 1-2cm left of growth (out of 3-4cm that's currently there) then we will remove the plates and allow the last few centimeters to grow. 

Why did we do this instead of so many other options? We knew we needed to continue to correct the leg discrepancy, that is currently at 4cm per measurement this week. It was at 0 when we left this time last year just so you have some comparison. Of course one option is another leg lengthening but that was so hard on everyone we are trying other options. We will be able to get 3-5cm of length shortening on the good leg which will actually make the legs even or have the right leg shorter by the time his legs are done growing by the age of 16. Who knew that's when boys' legs stop growing! This will set him up perfectly for his future hip surgery where he will lose about an inch with the reconstruction. All this to say, we've done a ton of research, okay Adam has, and we feel this is what's best for our situation. He will lose about 2" of overall height but it's the best of all choices. Sinai hospital continues to be the biggest blessing with a doctor who doesn't force anything, lays out all the options and answers ALL the questions we come up with. 

Now back to today...I was able to finally see Zackary about an hour after I spoke with the doctor and for the first time since I can remember he was crying when he woke up. Pure tears of pain. It was so hard to watch. I couldn't calm him down. He let me know this was the worst pain he ever felt and it took far more time then I care to remember to get it all under control. Once that happened he let me know it's his natural instinct to use that leg, flinch and move that leg since it's always been his 'good' leg and his left leg still isn't 100%. 

He's slowly learning to not use his right leg, or muscles at all at this point but they did admit him to the hospital for the night for pain control since he was having such a hard time. 
We've now been in our room about 4 hours and he's finally off oxygen (just 30 mins ago) and he ate a decent meal, is holding a coherent conversation and even lost a tooth that's been loose for about 3 months! Yep, it's been a day! 

The immediate future includes... being released tomorrow afternoon most likely. We will then stay in Baltimore one last night for safety then fly home Friday. He will need physical therapy for about 2 weeks back home then he'll be ready to rough house and play basketball again in about 4-6 weeks. 

Thank you all again. These words are never enough to explain our gratitude but I can't say it enough either so THANK YOU! Thank you for supporting, praying, donating, checking in and sending good vibes our direction. We definitely feel all the love. For now I'll let you all go and digest all the info I just threw at you and will update in a few days to let you know how he's doing. 

Until next time-

Momma Miller