End of Sick Kids and radiation

This blog is from September 25 - November 24.

Carson continued receiving gifts and uplifting cards during his extended stay at SickKids. He was on 6 blood pressure medications to control his really bad hypertension including 1 BP med called Labetalol which is usually only administered in the ICU. They made an exception and kept him in his regular room, but he had his own nurse 24/7 for several weeks. They started to make plans to fly him back to CHEO and send him to ICU, but CHEO was over capacity so we had to stay at Sick Kids. 

The TMA (thrombotic microangiopathies) caused major complications with Carson's kidneys and heart. The doctors did routine blood work, ECGs, ultrasounds and EKGs to monitor him closely. Carson currently has AKI (Acute Kidney Injury) and will most likely end up with CKD (Chronic Kidney Disease) He will probably need daily medications for life. He has level 3 of AKI out of 5.  The expensive medication that he's receiving weekly called Eculizimab ($14,000/1 dose) is working great and has been slowly healing his kidneys.  The holes that the TMA caused his kidneys have almost completely healed because there are only small traces of protein leaking in his urine.

Carson's potassium levels jumped up drastically out of the blue. This led to the ICU team coming up and intervening by administering several medications. He was closely monitored for potassium levels daily from that point on.

During his last two days at SickKids, he was allowed to go to the playrooms. He also worked on his mobility by taking short walks and spotting all the frogs in the hospital.

He developed a love for Kahoot (a virtual trivia game). He plays with everyone that visits him at home and loves challenging people to a Kahoot game regarding the frog life cycle. 

After 61 days at Sick Kids, Carson was discharged because he was off the Labetalol BP med. CHEO still didn't have a bed, so the doctors decided he could come home with us and do his radiation at the General as an outpatient and sleep at home!

We got home the night before Gryffin's 3rd birthday. He was thrilled to see his brother and celebrate with him. 

Carson was discharged with 12 different medications, meaning we became full-time at-home caregivers. He's currently on 6 of the 12 meds since his blood pressure is in an acceptable range. He's on 3 BP meds, anti-biotics and anti-nausea meds.  He's still not eating great, so he's currently on a special renal formula called Suplena that he receives overnight.  All of his meds are given through his mickey, a tube that goes directly into his stomach. 

Carson has to do 6 weeks of radiation (Mon-Fri at 9am) for a total of 30 sessions. Carson requested a frog mask for radiation, so they painted one for him. He's a radiation champ. He remained completely still during the procedure, so he didn't have to be sedated each time. The sessions are only 5 minutes followed by Carson chatting with the staff about frogs. 

Day trip to see Lyle, Lyle Crocodile at the theatre. 

Carson was at the hospital on Halloween and ran into Spider-Man. Carson wore two costumes this year. He was a tree frog and Lana Loud, his favourite character from the show The Loud House.  

He's now completed 22 of his 30 sessions, and he's doing great. He'll be done radiation on December 7th. His hair has started to grow back, but this week he started losing a lot of hair in the area affected by the radiation.  We were told that it may grow back, and if it does, it will most likely grow back thinner.

Out of the blue, as we arrived for our daily radiation, we were told that someone was waiting to meet Carson and that someone had a gift for him.  A man named Bob (seen below), who is also a radiation patient at the General decided to bring Carson a lion and some chocolates. In the tag of the lion, Bob wrote, "To: My Hospital Buddy, Strong as a Lion." It's amazing to see how some people have huge hearts and help complete strangers in times of need. THANKS, BOB!

Eric met with the radiation oncologist on Tuesday Nov, 22nd, and she explained which part of the brain is affected by the radiation (see pic below). Carson also had a hearing test that same day, and unfortunately he lost a little more hearing in both ears since the last test back in August. Although he has severe hearing loss in his right ear and moderate hearing loss in his left, the audiologist said that he won't need hearing aids which is great. His hearing is great up to 2000hz, but it drops drastically at 2500hz and up. She believes that hearing aids won't be much help and isn't worth it at this time. We honestly don't notice his hearing loss very much at home.