Post SDR | Day 5

Judging from yesterday, we predicted Day 5 would start off flawlessly...sending us off on a high note.
That's not exactly the experience we received. The good news is, it was very short-lived! However, while it lasted, our little guy was miserable and the little guy's parents (ME especially;) began to become very anxious for discharge and the journey home.

Kaz started out having another nauseous morning. He seemed more anxious than anything...almost waiting to get sick, since that has seemed to become the theme of the week. Trying to get pain meds down before his AM therapy session was near impossible because every time we tried, it immediately caused him to gag. This meant he went to his last therapy session completely out of it and in pain. He was such a mess he just gave up and actually fell asleep on the table before therapy even started!

Therapy was the final thing to do prior to being discharged, so after I got final instructions and paperwork from the therapist we headed to the room to finish packing up. Kaz just laid around trying his best to not get sick until we got the OK from the nurse to leave.

He managed to give me one smile for the FASTEST picture I've ever snapped before heading out the doors.

Once we made it to the car and hit the road to home...his whole mood (and tummy) seemed to change. The closer we got to home, the more talking, "jammin out", and everything Kaz-style happened.
The five hours ahead of us were actually enjoyable.

We finally made it back to the house and walked in to an adorably decorated surprise for Kaz! His Becca Bailey (aka Hillary Scott) had put together the sweetest Welcome Home house for us to walk into .... falling balloons and all!

Tomorrow we start with daily therapy and he also will be casted. The casts will act as an extra "stretch" for his ankles for the next few weeks to help him get really flat, sooner than later!

Couldn't be more thankful to be home and to have a happy, healthy boy! 

"No one whose hope is in you will be put to shame." Psalm 25:3

Post SDR | Day 4

Today was THE DAY! Kaz finally made a turn for the better... and we couldn't be more thrilled.
After a somewhat shaky early morning with a bit of nausea, he snapped right out of it hours before his first therapy session. Luckily this cancelled the plans for a new IV to be put in with concerns of keeping him hydrated and getting him home on time.

When he started asking to get up it was obvious he was feeling better. So I sat him in a chair and let him start giving orders of what to play next. First we started with his Ipod and played his favorite songs while he drummed and strummed...then I gave him something special I bought especially for after his surgery where he can make his own music:) 

After holding down lunch (this is truly a milestone lately - and very un-KAZ like!), we headed down for his first physical therapy session of the day. There we met Allie and Kaz immediately fell in love!
She was so great with him and easily pushed and encouraged him on, while also finding the way to his heart through music:)
Today was the first day Kaz practiced taking steps and he did wonderful! 

Kaz scored two special stickers after his successful therapy session and immediately following, ended up in bed for a quick nap before lunch and his next session with Ms Allie.

The PM session began around 3pm (4pm our time), which was quite late for Kaz as we have never seen him perform in therapy during that hours. After a few minutes it was obvious it didn't matter what time it was, as he was so excited to play and work with Allie. Once his hour was up and it was time to leave, he didn't even want to go!

Instead of going straight back to the room we'd been promising him we'd take him to "The Garden" here in the hospital. This was the first time he's been outside in 5 days... We sat on a swing together and then after a few minutes went by, he told us he was ready to walk. So, we got up, supported him how the therapists have showed us and we walked... and walked...

My heart is thankful tonight...

"Now then, stand still and see this great thing the LORD is about to do before your eyes!"

~ 1 Samuel 12:16

Post SDR | Day 3

This day is no joke! We heard from the very beginning once Kaz was a candidate for SDR and I began researching the surgery, risks, details, side effects, etc....that Day 3 for most is a doozy!
For us it was no different! Today was without a doubt the roughest day for Kaz. 

From early morning he began to feel nauseous again and this really should have come at no surprise considering all the meds his body was sorting through. Also, he began to feel more pain towards his back, since first thing this AM the doc came to remove his epidural line and the nurse removed his catheder and took him off all monitors. 

The other challenge Day 3 brings is therapy. After laying flat for over 48 hours, it was time for Kaz to get up. During the AM session the therapist came to show Preston and I how to pick him up properly and we also took him for a little spin around the 12th floor, where we're staying here at St. Louis Children's. He wore his sunglasses (at his request) because it was "too bright". He was not a happy camper, feeling a bit of pain as well as so much exhaustion, which caused our trip out to be extremely short-lived. Selfishly, the best part for us was getting to hold him again:)

Following more nausea and pain, after resting up a bit, we traveled down to the gym for therapy just after noon. Kaz began to do a bit better with complaining of pain and seemed to tolerate sitting in the wheelchair better than before. His therapist took it easy on him, but did work him for about an hour. She was so sweet to have all kinds of instruments gathered to use with his therapy. It was refreshing to see him smile, even for a moment when he got to hit the drum.

We ended the evening with a little stroll through the main area of the hospital. We are hoping and praying that Kaz's nausea has passed. 

**Positives for the day... Kaz immediately went back to using the restroom on his own once the catheder was removed! We were so thankful he transitioned back so easily! He also got his IV out late this evening!**

Looking forward to DAY 4! We are counting down now...

Post SDR | Day 2

Glad to share that Day 2 of bed rest was surprisingly FUN! The nausea wore off during the very early morning hours and since then our boy is back:) 
I guess anyone is happy to not be nauseous, so for him laying in bed while feeling better seemed enjoyable today. We tried to make the best of the boredom moments:) We watched some Ninja Turtles during the AM hours before getting too brave, being sure that his tummy could handle more activity. From there, things just got better:) They brought us bubbles to blow, we played a sticker game (thanks RSMS PTSA;), and he even had a visit from his new Aussie friend Cooper! Cooper had SDR surgery a couple of weeks ago and is staying here until his long flight home to S. Australia in a couple of weeks. His mommy and I met through Dr. Park's SDR page and she's been such a helpful friend and support to me, as another parent that has also been through this journey.

We have also been fortunate to have Kaz's grandparents here, helping relieve us from time to time! They left this afternoon and we will all miss them.

Now, for tomorrow! Kaz is so ready to get up. I'm a bit nervous to see how he reacts to moving as well as how much pain he will feel at first. Excited to see and share how it all goes tomorrow.

Post SDR | Day 1

Since surgery day is considered "Day ZERO", the day after surgery is "Day ONE" in SDR post operation terms. Day one and two are the dreaded bed-rest days. Not only is Kaz limited to the bed, but he's also required to stay completely flat, except for the side-to-side roll here and there. I thought this would come as more of a challenge for him (and us), however the nursing staff had his pain under control and the epidural helped medicate him enough to care less about even opening his eyes. 

Most of the morning went pretty flawless as the minor oxygen issues that he was experiencing surgery day faded away as the anesthesia wore off little by little. Besides waking when his vitals were checked or a bag was changed, he was mostly sleeping restfully. The only complaint he had was that he was afraid to get in trouble for peeing the bed (he didn't understand that a catheder was part of the plan). Poor little guy wasn't even awake enough to appreciate all of his sweet gifts sent!

He did eat some toast in the afternoon which made us all think he was one of the lucky ones with the possibility of skipping the nausea that is a very common side effect. Around 6pm the nausea began and continued all the way through the night...

Looking to the positive, for the first time we got to see Kaz's legs and feet feel like any other kiddo that doesn't have to face spasticity. His toes wiggled, ankles bent, and knees folded on command. It's the little things on even these tough days that make it all worth it in the end!

Let's hope his tummy settles tomorrow for Day 2 of bed rest!

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Surgery Day | Tuesday

We've finally reached surgery day! Lucky for us, Kaz was the youngest patient in the lineup for SDR today... so we went first.

We arrived at the hospital at 5:45am. They immediately took us back and we met lots of PAs and nurses. Kaz got all suited up in his surgery attire and he was ready to roll (literally)!

Here's a little video to show you how hyper he was pre-surgery around 6:30am.

Then they gave him some type of medicine that made him pretty sleepy and silly and whisked him away.

We returned to our little private waiting room, waiting for one thing... the phone to RING.

Around 8:20am they called to let us know the surgery had started off well.
About 9:45am we got another call letting us know they were half-way through and everything was good so far. Then around 10:30am Dr. Park walked in to our room and shared that surgery was over and everything went great. With relief... we moved to recovery to see our boy! All of this, much sooner than expected:)

Moving from recovery to our room was a little rocky, but as soon as Kaz got some ice for his throat and comfortable he was pretty good for the remainder of the day.

The main thing until Friday is laying flat! Unless eating we've got to keep him completely straight. The next few days should be interesting...

Surgery EVE!

Today was one long day to say the least!
At noon today, we headed down the pedway to the Children's Hospital to meet Dr. Park...

We started by watching a video to review details regarding the surgery before, during, and after.
Next we met the lady that answered questions and did a quick overview and consult with us about everything.

Then, we finally got to meet Dr. Park! 

Kaz definetly turned it on for him:) He was sure to show him the Kaz we all love! Dr. Park gave us wonderful feedback on the longterm outcome for Kaz as well as all of the other work we have to do from here. 

The good news is, there is a possibility we may not need to do the in-patient therapy we thought! That means we could end up returning home once leaving St. Louis and just having to travel daily for therapy in Lexington.

Big day tomorrow! We will check in at 5:45am and then the surgery is suppose to begin around 7:15am. Surgery should last until 11am. 
Prayers appreciated as always!

Check out Psalm 139 13-16... a good friend of mine sent it to me! All kiddos apply of course!

Happy Easter from St. Louis!

We made it to St. Louis last night! We found a great little spot on Euclid within walking distance of our hotel and stuck around for quite a while to catch some of the Final Four... Kaz made sure to make friends with the guys running the jukebox. He was happy to request his "usual" over the loud speak, Lady Antebellum and Florida Georgia Line ;)

Today we planned to visit a local church, however our plans didn't quite pan out. Neither Kaz or I slept a wink! So, after getting an early morning nap, we stopped for a bite to eat and then headed to the zoo! The St. Louis Zoo is beyond perfect and so was the weather. Kaz was sure to stop by all the good spots and take a peek at their animals here. No surprise, his favorite part was consuming as many sweets as possible, riding the train, and getting his face painted. The face painting part blew our mind because he's never been a fan! He chose a Superman mask, which I think looks pretty perfect on his handsome face:)

Tonight we are headed to the St. Louis Arch!

Tomorrow is a BIG day for Kaz! He will meet Dr. Park for the first time in person and also his therapists and anyone else playing a role is his surgery and post operative therapy. We are hoping to have a surgery time for Tuesday sometime tomorrow afternoon.