Support Joyful Jaxon’s Journey with Moyamoya

Copied from Jamie’s Post:

After MONTHS of ‘preparing’ for the worst, & not thinking it would actually happen, the worst happened. We were not prepared. This week has been physically, emotionally, and spiritually draining. Thursday & Friday Jaxon was up throughout the night and I was thinking maybe his teeth were bothering him but he would settle with me and there wasn’t a real indication of any illness or anything else going on. Saturday he woke 3am with a high fever.. I was alarmed, but just like with the older boys, alternated between Advil/Tylenol and kept checking his temperature, he was refusing his bottle and he wasn’t wetting very many diapers, and the fever wouldn’t break. By the time dinner rolled around I knew I didn’t want to continue the night like this so I took him into the ER. I said, he’s at high risk of seizures and I know that fever could cause seizures. The doctor was super through given his history and reassured me if a seizure was going to happen it would have happened already, that he has a double ear infection. He also got the fever to break and kept him a bit to check in on him, concerned he may get dehydrated from not eating/drinking we were giving him pedialyte & we got our antibiotics and headed home.

I was still administering Tylenol/Advil around the clock & monitoring the fever. He had a low grade fever all day so I wasn’t as concerned on Sunday but he was becoming irritable and still refusing to eat/drink. Sunday afternoon he awoke from a nap in his playpen and his left arm was limp at his side. It wasn’t as noticeable as you would think.. I questioned myself for being paranoid but he was irritable and was crying, this cry was not familiar. I thought he hurt it/may have slept on it funny. Cody confirmed it wasn’t moving like normal. I think I just knew then that things were about to change. I headed out the door with just his health card and a diaper bag. Back into the ER and he was not himself… so beyond inconsolable. They didn’t waste any time, immediately he got scans done and his arm was physically appearing to be fine. They called Chatham and as we were waiting on the ambulance, he began to have a seizure in my arms. He cried this cry from Wallaceburg ER to Chatham ER. They did a CT Scan, after his CT there he had another episode. They called our paediatric neurologist in London, and the London team came out to bring us there. When they got to Chatham they administered medication to stop the seizures and Chatham’s CT confirmed he’d had a stroke.

We were admitted to the paediatric critical care unit in London Hospital. We were there Sunday by 1:30AM. They did another CT scan and had been previously concerned of a blood clot in the brain and this scan confirmed that was not the case but there was a further narrowing in the blood vessels in his brain, indicative of Moya Moya disease. He would only settle in our arms after sedation and would not stop screaming unless he was sedated. The worst 72 hours of my entire life. Cody & I took turns laying awake and rocking him, holding him, offering him any sort of comfort possible. Multiple IVs, monitors, medications, and days with 0 sleep.

We were discharged from the PICCU Tuesday night & moved up to the paediatric floor as Jaxon had improved from his critical state & had regained function in his arm thankfully. We had been awaiting an MRI, which they took him down for yesterday morning. His paediatric neurologist came in right away, she let me know she had read the scans and sent them to her neurology team in Toronto. He suffered seizures & 2 strokes in different parts of the brain. The infection caused a fever, the fever caused the seizures, the seizures caused the strokes, and the strokes caused his pain and screaming causing the blood vessels to constrict.

I am explaining this the best way I know how, I know it’s a lot to read, so if you love baby Jax and you’ve made it this far, thank you ♥️. We still have a lot of unanswered questions.

Our paediatric neurologist will be meeting with the Neurology Team at Sick Kids Hospital in Toronto next Thursday. The scans have been sent, the referral is done and she’s already connected with the team, she reassured me that they do not waste time on cases like these and she’ll be travelling to them to present Jaxon’s case. The team will come up with a surgical intervention plan together. He will need an angiogram prior to any surgery as well and they’d like him to have it done there.

Currently, there’s a measles outbreak in the hospitals in Ontario and many viral infections, so if Jaxon has good vitals throughout the night we may be able to be discharged prior to travelling to Toronto, and keep him in his element.

Our big kids miss us and we ran out the door with nothing (thank you to our people who brought us comfort items and made sure we ate/showered). We know this is the beginning of a new way of life and we are forever changed by it