Our Heart Warrior Jaxon

09/05/2023

Hello everyone. It is with incredibly great sadness to say this. Our sweet, cat loving boy, Jaxon, went peacefully in our arms on Sunday, September 3rd at 611pm. Thank you from the bottom of our hearts to everyone who has followed his beautiful journey and provided support. He surely felt everyone's love. 💕

08/28/2023

Jax has continued to have stable-ish days. He is still extremely critical, and all we can do is sit and wait. He remains in multiple organ failure and is quite jaundiced. His wounds are not healing, and we continue to run into multiple bumps. We've been staying overnight with Jax all week. Despite all this, he still gives the odd smile and communicates the best he can. He loves his water sponges 💕

08/25/2023

We had a stable day. 💕

08/24/2023

Please keep thinking of our boy Jax, as he fights to climb yet another mountain. He has declined again, just like over the weekend. All we can do is be here with him and watch him fight another fight.

Love you little buddy. 💕

08/22/2023

Just a rest day today. 💕

08/22/2023

Jax is out of surgery, and all went well - they got to close up his abdomen completely! He had a hernia repaired as well (I originally thought it was a risk for later, but we just got word that there was a repair!)

08/22/2023

Jax is heading down to the OR for what feels like the 100th time. They will see how his open abdomen wound is doing and hopefully either fully or at least partially close it. Overall, he has surprised us all and fought through one of the most horrendous weekends in a lifetime. He was doing well today. 💕

08/20/2023

🎊💕

08/20/2023

Happy 3rd birthday, little man 💕

He made it through the night with some small struggles, like with his blood pressure, but so far, so good.

08/20/2023

Update: the first procedure went well; they were able to stop the bleeding. However, his abdomen was full of blood and fluid. I've never felt his stomach so taut before. The first idea was to do an ultrasound guided procedure to put a drain in, but they found the blood had already coagulated and the only option was to go in surgically, which is not what was wanted due to the significant risk.

We discussed it with one of the docs, and decided to at least try. If we did nothing, he would not make it. At least by going in surgically to remove the clots, he will have a chance. That being said , we are still at a huge risk of him not making through this, as he now has another open wound and, in the past few months, he has really struggled with healing.

He went down to the OR for a second time this evening, where the successfully removed a lot of the clots. He looks good colourwise, his numbers, and the swelling. We just have to wait and see how he recovers. He currently has a second open wound vac and has plans of going back to the OR on Monday to do a wash out and hopefully close his stomach wound; provided he heals okay in the next 72 hours.

08/19/2023

Jax is down in the OR now. This morning, things went downhill very quickly; they did a CT angio scan and found a main artery to his stomach had ruptured, and he's bleeding out into his abdomen. The prognosis is not good, it's a catastrophic bleed in a tricky spot. There is one procedure they are willing to try, which is going in through an artery like a cath procedure and blocking off the bleed. This has risks, of course, but its worth trying. Open surgery is not an option as he will not survive it.

08/19/2023

It has been a whirl wind of a week. Jaxon continues to battle necrotizing pancreatitis and has been needing insulin. The team consulted for a couple of days; there were plans of going in surgically to remove the pancreas, but given how critical Jax is, the risk of death was too great. They are monitoring it for now and will see if there's enough viable pancreas for it to be fine or if it will liquidize, in which case he would be insulin dependent for life.

Yesterday was easily one of the top most terrifying days. The dialysis catheter in his neck was having troubles, again, but this time, they had to rewire it. Unfortunately, this did not go as planned, and he began to lose a lot of blood. Surgeons were called to come and assess. In the end, he got fixed up by the amazing doctors up in PCICU, received some blood products, and the new line is working better than ever. Due to the dialysis being off and needing blood products, he got insanely swollen like the first pic.
Today, the swelling has come down some, and his infection markers continue to come down! Tomorrow, we prep to decorate his room for his 3rd birthday on Sunday. 💕

08/15/2023

Jax continues to have his ups and downs. The team is currently meeting with general surgery and others to discuss his necrotizing pancreatitis, where it will be decided if the pancreas needs to be removed and if he will survive that surgery. They have to weigh out the options as right now another surgery is a massive risk, but with the pancreas going necrotic, there may not be a choice. If it goes that route and he does well, he will be an insulin dependent diabetic on top of all else.

The bag of blood you see there is from his left drain. It's believed to be old blood from a pocket that was drained and not a concern at this time.

08/12/2023

Slight disclaimer - this is when Jaxon was a pro at the stairs, which is why I wasn't in a huge concern, if that makes sense! His favourite thing was butt scooting down the stairs. One day he thought it'd be funny to go "look ma, no hands".

08/11/2023

08/11/2023

Jax continues his long battle. All week, he has been dealing with fevers and elevated heart rates. Yesterday, his temp reached 40c. They put ice on him, and it thankfully came down - he even gave Ty some smiles as he left! This infection is really affecting him. We now know what it is. It turns out it's a common infection patients get when they've been up in the icu/hospital for so long. It just seems to be hitting him a lot worse than normal.

After trying different things, they decided it was best to put him back on vancomycin, an antibiotic that he responded well to. The unfortunate catch is that it does some good damage to his already damaged kidneys, but we will worry about that later. His greatest risk right now is this infection.

08/04/2023

Jax is doing as well as he can be. He is quite ill, but something has finally cultured! He's got a bacteria infection; we should know soon exactly what so we can properly treat it. The plan is to get the infection under control and then work on the vent trials towards extubation. A tracheotomy is still on the radar, but we are all taking it day by day. For now, we'll focus on this infection and go from there!

He had a CT yesterday as well, where they did find a clot in his leg where his femoral dialysis line was. Not sure what the plan for that is yet!

08/02/2023

I got the call just after 5pm - Jax came out of surgery well. They didn't end up needing to open his sternum again, which is great. They went in, flushed everything out, put in a drain near a cavity by his heart, and he has an open wound vac at the bottom of his incision. There is a large sizeable open wound with sponge packing it in order to encourage healthy tissue growth. The surgeon said this sizeable wound will take months to completely heal. Surgeon is more confident that all of Jaxon’s current issues are due to his abdominal issues, like the pancreatitis. So far, MRSA hasn't cultured in his blood which is another positive. He'll continue a med course in order to treat it as well!

Edit: I realized I didn't mention this update; Jax has contracted MRSA and is presently on isolation. They're keeping a close eye on it and as long as it stays out of his blood, the easier it will be for him to fight it!

08/01/2023

J-man is down in the OR now. 💕

07/31/2023

Hi friends. Jaxons surgery has been moved to tomorrow; the OR was too busy today. He continues to vomit and dealing with his usual. Ty got to still hold him today though! The new catheter in his neck appears to be working better than the one in his leg so far, and he doesn't seem to be too bothered by it. He got to nap peacefully on Tys lap after getting some ketamine and Ativan for bandage changes. 💕

07/31/2023

Jaxon will be heading back into surgery later today - they found a tunnel that starts at one of the open wound sites, leading directly to his heart. The surgeon needs to go in and close it all up. He now has a catheter in his neck for dialysis, and his blood pressure has been dropping some.

07/29/2023

Probably my favourite video I was able to sn**ch of him while we got to come home for the week in February. Can’t wait to have everyone home hanging in the living room.

07/28/2023

Today is an okay day. Jaxon got to see his favourite cat, Joffrey, and was thrilled! He "meowed" at Joff and reached out to him. Jax is visibly more uncomfortable today; most likely from the new drain they put in yesterday. Understandable - I watched what it entailed, and it definitely looked like it'd be sore the next day!

Jax is being prepped to go down to the MRI right away. This will give them a much clearer picture on if these pockets of fluid are connected and the best approach on draining them.

We will no longer be challenging his kidneys today; his urea and creatine levels creeped back up so we will be waiting on that now.

07/28/2023

Yesterday and present day, July 27th, have felt the most positive since transplant. Jax has his old personality still - a total goofball who loves to play with bubbles, hold your hand and roar at you.
Today one chest tube drain was removed entirely, his wounds all look great so far, and we got lots of smiles! We met with the team today just to get all up to date on everything. His kidney numbers are trending up - they will be challenging kidneys tomorrow after his MRI. This will allow us to see if his kidneys are actually getting better. The hope is to eventually head back to the OR to get a more secure peritoneal dialysis catheter in order to continue dialysis at home for as long as it is needed. They've also been able to go down a little on the vent, so soon we may be able to do vent trials as well! If he continues to struggle to breathe on his own, there is the potential of needing a tracheotomy.
While we remain cautiously optimistic, we are still hopeful that these positive steps are finally the ones getting us closer to going home!

07/28/2023

They tried going in with a needle to get the fluid around his kidney. Unfortunately, it didn't give enough for some cultures. They found an area in his left side to go in and put a different kind of drain, which has been successful so far! They've pulled plenty of fluid from his abdomen where they got proper cultures. One of these tests returned with high lipase - one of the indicators of pancreatitis. Sure enough, after some more investigations, it appears we may have found some answers to his problems! He's also since been placed on hemodialysis; it's a giant machine that does filters through your blood at a continuous rate.

07/28/2023

I wish I could say the days following his transplant came as a surprise. Ty and I have a saying now whenever we hear he's not progressing like hoped. Typical Jaxon, it's Jaxon; we expect it, etc. Our boy has always been slow to heal; it's always on Jaxons time!
Jax was extubated June 29th and placed on high flow oxygen. It quickly became clear that he was working incredibly hard to breathe - he went on the bipap to help but there was no change. He was reintubated on July 2nd. His numbers were not looking good - infection markers were up and climbing with no explanation. They have done many cultures, imaging, testing; you name it - they did a chest wash out on July 6th as well. His leg even suddenly grew an infection site and oozed pus when biopsied - not even that gave us an answer! Everyone has been stumped over Jaxons situation. High fevers, fluctuating blood pressure, nothing seemed to be going right. He was so grumpy. They did find pockets of fluid throughout his abdomen and back area, not to mention how part of his diaphragm is paralyzed, the other half not functioning properly, which explains how he cannot breathe on his own.

07/28/2023

And then the day came. 4:23pm on June 23, 2023 we got the call we weren't expecting. It sounds weird to say, I mean eventually he'd get a new heart but that feeling when you actually, legitimately get the call saying there is an offer for Jax and the heart is perfect? Breathtaking. Disbelief. I find myself even now still pausing to think wow, it actually happened. After what feels like a lifetime of hospital appointments, surgeries, you name it - the day finally came.
Surgery was to occur the next day on the 24th, however it was delayed. We got a little scared of this as we know a dry run is a possibility. But then the morning of the 25th came and we walked him into the OR for the 14th time. Transplant was a success, there was a diaphragm hernia that was repaired and the peritoneal dialysis catheter was placed.

07/28/2023

07/28/2023

Once again in true Jaxon fashion, nothing is simple! He went down to the catherization lab March 17th and the 23rd as his pressures were struggling and they were trying to find out why. He was also dealing with hemolysis - the break down of red blood cells. On March 31st they tried changing the Berlin (the VAD) heart pump. That gave us no improvements like what was hoped, so on April 12th Jax would go to the operating room for the 11th time in his life where they did a fontan revision, tricuspid valve repair and a revision on the VAD cannula. Issues continued; they tried changing the pump again on April 24th and then on May 1st was the 12th trip to the OR where they replaced his Berlin cannulas for larger ones hoping that would be the solution. It helped the hemplysis thankfully and his pressures were managed with a lot of pressure medication. All throughout this ordeal, Jaxon was still his happy and sassy self.
Man the day we brought his cat in... he was so thrilled! It was the first time he tried to stand and walk by himself. While on the Berlin heart he never got to the point of walking on his own; I don't blame him. I can only assume the weight of the pump threw off his balance!