Care for Kruz

KB back at QCH. A few appointments today including a first up CT Scan to review his spine and pelvis. He was a good boy for the scan, he remained very still so they can hopefully get good images. His body has changed over the past few months which could be causing him some issues, so they need see more detailed imagery. Never a dull moment with our superman! ❤️💙 🙏🏻

Kruz's Spinal Fusion Surgery, complications and the journey he went on.
This has been written in many posts on our personal pages and now slotted together for one on his page. Written from both Brent and I.

Embrace yourself this is a long one!
May 26th: At Queensland Childrens Hospital, Kruz went under GA at 9:30am, probably the hardest goodbye we have had to date as he drifted off to sleep. Mind you of course Kruz went to sleep in style, with his music blaring and the nurses/doctors having a dance to gangnam style and sexy & I know it.

The first incision wouldn't have happened until at least 11am due to being face down for sidesery so a lot od prep goes into that for kruzs safety.

It was a long day and wait for Brent and I. We finally got the call at 4:20pm to say surgery had finished, it was tricky but the curve was fixed to a certain point. We were then waiting for the dressings to be put on and then off to PICU.

Still waiting to see our boy, PICU finally called around 6pm for us to come in. It was emotional but so nice to see him. Lots of Blood pressure and haemoglobin issues so he is throwing a few spanners in the works already.

29th May: Update on Kruz: poor kid has had better days. He had a couple of blood tranfusions during and after surgery. BP was very low and concerning so many meds in board to stabilise for the first 24hours.

One massive complication post surgery is Kruz's Baclofen pump. His pump is at the front of his stomach that has a catheter that feeds medication into his spine for his tone. That has been dislodged and now not working, this requiring more surgery, but it's at a stand still in hope oral medications will help so he can get over this surgery becausese going in for another.

Unfortunately that also resulted in kruz not only dealing with spinal pain, but withdrawal of baclofen. An awful experience for Kruz.

Pain has been hard to work out as nothing is entirely working thats keeping him awake to want to eat but comfortable. New plan for pain today so hopefully it works.

He has sat up out of bed and is looking nice and tall, will be great to see how much taller he is now.
Two rods and 19 screws have been inserted for his spinal surgery and fused to his pelvis.

31st May: Kruz Update: Day-5 Post Op

We would love to be updating everyone that he is kicking arse and planning to head home soon (which is what it should be), but unfortunately, that is not the case.
The complications of his onboard Baclofen Pump now not working that occurred during his surgery are having much larger impacts with Kruz experiencing symptoms of Baclofen withdrawals which is very distressing for him and makes his body and brain not very cooperative at the moment (no sleep, severe agitation, spasms, loss of appetite, highly likely hallucinations etc). It’s making him super exhausted which then feeds the cycle of challenges even more 😔

Our Superman isn’t a textbook case (never has been), there is lots to still unpack and now being the weekend, it makes it a bit more challenging without his main team being easily accessible.

Kruz needs to be able to get a consistent chunk of quality rest to be able to start the repair process which isn’t currently happening at the moment.

The medical experts don’t know exactly how to approach it, but have now at least got him on oral Balcofen to get it back into his system and are also trying to work on some other meds that can offer him some relief to get him back on track and well enough to start rehab (which is as basic as being able to get him to sit comfortably in his wheelchair to drive him home) and then attack the next phase.

3rd June: Kruz Day-8 Post Op:

This kiddo 😮‍💨
After a pretty decent sleep last night, today was meant to be a good day to back up a more positive one from yesterday. However, Kruz has gone in the opposite direction and has basically floated between being semi to non-responsive all day with only a few fleeting moments of him being alert.

Kruz now needs to endure another surgery next Tuesday to get his Baclofen Pump back up and working which unfortunately means a very extended stay in hospital and another week of a barrage of various medications to try and keep him comfortable which is proving to be very difficult.

They are going in a bit blind and the neurosurgeons won’t know how to approach the fix until they are in theatre….
1. somehow repair the catheter in isolation
2. undergo a full pump replacement.

Ideally, it’s the lesser of the two evils, but time will tell.
Reviews of his health and medications means a constant precession of docs n nurses are in and out of his room all day & night and now they trying to work out what’s happening to to cause his current situation which could be a number of things and they have now taken a second lot of bloods today (as the first lot clotted…of course it did 😔) to hopefully rule certain things out.

Majority of these challenges are related to his pump which is very disheartening for this poor kid as it could have been avoidable and another operation (whilst is now needed), puts extra stress on him and increases the risks of something happening which we aren’t really keen on at this point in time. Plus his pump wasn’t due to be replaced at some point in 2026 before it expires in 2027, so it would have given him ample time to prepare himself.

We had a glimmer of hope and a possible window of opportunity to get him home for a few days before his operation, but it’s dependent on his health and if can we manage it from home. At this point it’s not looking good, but we are hopeful that he can turn a corner regardless and get his strength up and ready for another battle! 🥊 💪🏻

11th June: A new day and a new Baclofen Pump for Kruzy Boy! 😅

After another stressful wait, we were reunited with Kruz just before 5pm, so probably a good 2hrs of him being in theatre.

Once the surgeons went in, they discovered that the catheter was very deteriorated, kinked and blocked, so they ended up replacing everything. His new pump automatically turned on at 8:30am this morning and will start on a lower dose and ramp up to replace the oral version, so still oral boosters for a little while yet, but hopefully he gets the full benefits of brand new hardware and accessories being installed, as well as some clear air between operations! 🙏🏻🍀🤞🏻

Hidden under his dressings KB will have a 5-6inch incision on his stomach (to remove the old one and slip the new pump in) and they opened up a section of his existing incision on his spine and used that to navigate the catheter up it.

As replacing the pump was more invasive, he has to be literally flat on his back for 3-days and will be in hospital for another week! 🫠

He’s come out of this very alert and hopefully we have a relatively calm kid for the duration of his stay, but it could be challenge given his detest for hospitals, but could you blame him?! 👎🏻

We are very thankful that we got some home time in between as all this just feels never ending at the moment being on the same ward again (and the amazing ambience that hospitals have to offer), but there is some more 💡 appearing in the tunnel which is positive! 🙏🏻

Not sure where this kiddo hides his cape, but wowwee, his resilience and strength is from another planet! ❤️💙💪🏻

Which ended up being 6 days laying flat due to swelling and this can create a csf leak so he then had to stay longer on his back. Each day was a slow process of going up in dose for his Baclofen intrathecal, to then decreasing oral Baclofen, to where he was completely off it.
Finally after a long we were at a better place and Kruz got home on the 18th June. He hadn't been himself, off pain meds but body adjusting to its new norm was very difficult for Kruz to deal with. Unfortunately an extra trip back to Brisbane to turn his pump up and then within a week he slowly starting getting back to his baseline, his norm.🥰

A week later Kruz celebrated his 14th birthday which was a nice day out walks at the beach, family dinner of his favourite and choice KFC and of course icecream for dessert. 🥳🥳

It's definitely been a journey and one we would never want to endure again.
We hope with feedback to the hospital we can provide them so reflection on how to look after kids like Kruz with complex needs and remember everyone is very different. No text book or stats sheet is going to work for a kid like or similar to Kruz. We hope moving forward surgeons will embrace a new approach so no one in the future has to go through withdrawal and a second surgery that Kruz did have to face.

Onwards and upwards, thank you for everyone's support, well wishes and just those that helped with our girls during this time. 💙❤️💙❤️

A lot has been happening for the second half of 2024. Kruz has taken a long time almost 10mths from Dec last year to Sep/Oct this year to be semi back to where he was. Still many ups and downs, medications added in and some being taken away, but there has been more of a light at the end of the tunnel. He was well enough to attend school every day for term 4. Which they had been amazing all year.

His scoliosis is at a terrible 89degrees curve 😢, so that's causing pain and discomfort daily. Surgery will be mid 2025.

He has had many outings with lots of family members to Cotton Tree and Botanical gardens. Kruz and his support worked Chloe love to go to the Mooloolaba beach for a walk and a regular morning muffin once a week or sometimes an arvo icecream.

Bayley is loving playing with Kruz and his iPad. 💙

Oakley is always saying good morning and good night to Kruz but forgets he weighs a lot and Kruz can't protect his face 🤦🏼‍♀️😂.

For Christmas Kruz was spoilt rotten and of course lots of Jordan gear, but this year he was given a Fish tank. 🐠👟

So yesterday we all headed down to the aquarium to pick out a Beta Siamese Fighting Fish. Later that night Kruz settled on a name "Bubblegum". She is very pretty! 🐠🩷

Let's hope Kruz has a great 2025 with very limited health issues. We know the surgery will be huge but fingers crossed that's his only obstacle for the year 🩷💙❤️

Kruz out on an adventure to the Maroochy Botanical gardens with Nicki 🩵

Kruz is officially now a teenager! Happy 13th Birthday Kruzy boy! We hope you have a super day. 🩵🩵

Sleep study for Kruz!

Well what a weekend for Kruz. A surprise visit from his bestie and a trip to the Australia Zoo. Kruz was so happy to see Ange and have a little bit of his normal, seeing we have turned his world upside down with the move and changes.

Australia zoo was amazing, Kruz in his new power chair allowed him to see things at a height. His favourite was the encounter feeding the giraffe, otters and koalas.

Kruz was so smart and we have no idea where he found it but after Ange read the sign about crocs to him he then said the word "blunt", smart boy.

Snuggles with Oakley at the end of the day.

Trying out the new stabilio seat in the hippocampe!