Avett's Power-Up Odyssey

06/03/2024

We had our 3 week post-op appointment today and news isn't great but isn't terrible either...

Because his surgical site developed an infection and opened up, it set back healing. He will remain on antibiotics while we do very gentle debridement of the sloughing tissue at home.

Unfortunately we also can't start physical therapy yet, which we were hoping to be cleared for today. He has been having a lot of pain in his back and legs related to difficulty with coordination and a shift in how the muscles and bones in his back are used now that his spinal cord can move freely. Any time that there is limited mobility (like a tethered spinal cord restricting his ability to move as much as he can now), the muscles become weak. Now that he CAN move more, those muscles, ligaments, tendons, and joints are painful because they have been weak for so long. Physical therapy will help him with strength and conditioning to regain full function and not be in so much pain anymore.

We will return to see them either next week or the week after to look at progress.

27/02/2024

Update:
Neurosurgery wants to give his antibiotics another 24 hours to work and see how the incision looks tomorrow. The open part is superficial and the swelling may be making it look worse than it really is. We will reassess tomorrow 🫠

In the mean time, I'm keeping it clean and dressed. I know it's hurting a lot more now because it's so big and angry-looking.

Thanks for all the support ❤️

As (not proud) a reminder, our gofundme link is on the "about" section... I've had to miss a lot of work through all this so anything would be appreciated 🫠

27/02/2024

The top half of Avett's incision has reopened. We are awaiting a call back from neurosurgery to find out if he will have to be readmitted or if we can be seen outpatient today.

Send him all your good vibes ❤️

26/02/2024

Unfortunately, it seems that Avett has developed an infection at the site of his incision.... Which means we are back at ETCH today 🫠

25/02/2024

Our guy went on a walk around the block with his dad today! They did nearly a mile!

Brandon Brodersen

16/02/2024

Our dude is getting better and better each day!!

A TENS unit has made a MASSIVE difference for him and the muscle spasms are becoming less frequent. He is able to sleep through the night now, too!

As you all may know, his #1 wish for this surgery was to be able to get taller and start growing again... We haven't been able to get an accurate height until today because he was either in bed or couldn't stand up completely straight for a measurement. Well, he was able to today for a few seconds to get a final measurement!

Height before surgery on Monday morning (and for the last THREE YEARS):
52.18 inches
Height after surgery:
⭐54.4 inches⭐

Can you imagine how painful it must have been for your spinal cord to be restricting your height by over 2 inches?!

He's expected to jump around 7 height-for-age percentile points in the next 12 months 🥹❤️

Before surgery, he was in the 2nd percentile- as of today, he's in the 14th percentile!

14/02/2024

We broke out of the hospital!!! What better way to celebrate than hugs and chess with his bestie ❤️

14/02/2024

The Va**um helped SO MUCH overnight with his muscle spasms and he was actually able to get sleep 🥹❤️

He's moving slowly and getting used to the new feeling in his hips and legs but he took a stroll to the playroom! Obviously he had to challenge his dad to a game of air hockey 🤣 he's also been kicking dad's butt in chess the last few days.

Neurosurgery said if he was able to get up and walk today, we could GO HOME so it's looking like we may be back to our own beds tonight as long as he keeps this up 😍

We will be going home with a muscle relaxer and pain meds... PT probably won't start for another 2-4 weeks. His biggest struggle right now is bending or trying to sit/stand without the muscle spasms in his back.

I'm so proud of him 😭❤️😭❤️😭❤️ he's struggled with motivation the last few years so I was really afraid that would hold him back in this recovery but he's completely blown us away!!!

14/02/2024

What an extreme jump from where we were just a few hours ago!!! He was DETERMINED to stand up and he yelled with excitement after taking a step 🥹 his muscle spasms in his back were intense but he was able to breathe through them like a champ.

He said his hips feel pretty wobbly and his legs feel weird because he's always felt a "pulling and tight" pain. It may take him some time to coordinate his movements now that he has more range of motion.

He had a hard time standing totally straight so we will get a better measurement in the coming days but it looks like he is *at least* an inch taller than yesterday morning, when he went into surgery. In the bed, he was measuring 3 inches taller 🤯

He hasn't grown taller in three years 🥹 this is HUGE.
Send him all the good vibes tomorrow! Our goal is to get to the bathroom and back!

13/02/2024

We had some setbacks today... Unfortunately sitting Avett up has not been well tolerated (causing spinal headaches) so we have had to go slower than we hoped. We also really struggled to control his pain today 😞 they ended up ordering Va**um because the hydrocodone wasn't really helping the muscle spasms in his back.

We were hoping to get him standing today, remove his catheter, and have him walking tomorrow but it may be a few more days.

He was very happy to get a visit from the therapy dog today, though!!! He's missing his pups at home ❤️

13/02/2024

We made it through the first night 😅

Dr. Savage came by and cleared him to start elevating his head slowly at noon. Fingers crossed that it goes okay! If he does okay, he may even try to walk today 🥹

I know he would appreciate some letters, so if you'd like to send him some mail- you can send it to my office! 5344 N. Broadway St. Ste. 103 Knoxville, TN 37918.

13/02/2024

Update:
Avett has been crawling out of his skin being stuck in bed laying flat... I think the sensory overload of all the beeping, tubes, wires, monitors, and IV's have done a number on him today.

*Very Avett moments to share:
• his first words when waking up were, "my ass is so big that it's making my back curve up" 🤣🤣🤣
• I went into the bathroom for two seconds and he called the nurse's station to "come fluff his pillow" 🤦🏼‍♀️
• I ran outside while his dad sat with him and he attempted to sit up- immediately got a brain crushing headache 🙃
• I laid down and turned the light off- within 3 minutes he had ripped out both IVs.

He did develop a small splotchy rash during his second dose of vancomycin, then flushing, sweating, and a rash covering his arms by this third dose sooooo probably gonna add that to his allergy list.

He still has a catheter in place... It's going to be a loooong night. Everyone, cross your fingers and toes that tomorrow, his trial of raising the head of his bed works and he's not stuck in bed for another 24hrs 🤞🏼

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