Dear Foxbox: A letter from Jimmy Joel
Dear Foxbox,
My name is Jimmy Joel and I am 14 months old. My mom and dad are Joel & Annie. I’m an only child and have a few medical conditions we found out about when I was 4 months old.
My mom felt like I was a little warm and breathing weird so she called the on-call nurse to see if it was something to worry about (she is the BIGGEST worry wart). The nurse said to call 911 but instead my parents rushed me to the local ER.
They drew my blood and left the room. Pretty soon, the Panda Team was at the door. The team put me in their ambulance and wouldn’t let my mom come because of Covid. That made her super sad.
They didn’t tell us what was wrong but brought me to Doernbecher Children’s Hospital in Portland, OR. I went in to the Pediatric Intensive Care Unit (PICU) to get the best care I needed. My parents were doing their very best taking care of me at home and unbeknownst to all of us I was born with End Stage Renal Disease (ERSD) Nephrotic Syndrome. That was causing all of my electrolytes to be nonexistent. I could tell my mom and dad were so sad and so scared. They felt so guilty for not knowing what I was going through. I would try to reassure them through little smiles that God was taking care of me.
I went in on January 7th, 2021 until June 26th, 2021. I got to go home a couple of times during that but I needed more care at Doernbecher. They tried to help my kidneys anyway they could through blood transfusions, albumin infusions, so many surgeries. Then I started to have seizures so I needed some more help getting MRIs, EEGs, and being monitored for a long time. The next step was to remove a kidney and things didn’t change much. If anything, things got worse, so they removed my other kidney. I’ve been on Peritoneal dialysis since March 3rd, 2021. In June, I had to go back to the hospital for hemodialysis for a while to get my peritoneal area healed because of a hernia surgery. That didn’t make me feel so good. My mom and dad never left my side and one of them stayed with me every night.
Now I feel a lot better! I’m home with my mom and dad and doing well on dialysis! I graduated to only having to get my blood drawn once a month. YAY!!
I found out this week I’m not growing fast enough, even though I feel like I’m a big boy! Mom has to start giving me growth hormone shorts to start growing to hopefully get a kidney transplant this year. I love to run around the house in my walker and yell for dad. I get so excited to see my little cousins that play with me. I’m a strong little guy and my mom and dad love me so much. I’m their little honey pot!
Before Foxbox came, my mom had a few toys in her diaper bag that I played with and sometimes I didn’t feel so good so I just slept. When I was feeling better, this lovely lady Kat gave me so many toys and blankets that made me so happy and comfy in that [hospital] bed. She was so generous and brought so many smiles to that hospital. It saved my mom a bunch of time and money not having to drive home/store to get toys. I didn’t have to play with the toys in the [hospital] toy room because I have a weak immune system. I loved all the toys and snuggles and, best of all, the sit-me-up toy thing that I could spin around and play with [my] toys! Kat has been so sweet checking in on my mom and thinking about us when I wasn’t doing too well.
Thank you so much Foxbox for being so thoughtful, caring, and generous to all of us tough little kiddos and a big thank you from my mom & dad for all of their little goodies. The YETI’s haven’t left their side since they got them!!
Love,
Jimmy Joel
