Zane was born to Kirk and Brandy Westbrook on April 6, 2015. He was healthy baby at the beginning, besides a hernia surgery and tubes we had no issue. He was the happiest of babies. 

In August of 2016, Zane got a severe case of croup. We were in the hospital for 8 days. He got so many breathing treatments, steroids didn’t really work, but it finally resolved and we were discharged. [We later found out he had Laryngomalacia and that was fixed during surgery in 2017.] 

When we left the hospital after he had croup, he was a little swollen in the face, but I knew you can get “moon face” with steroids so I just assumed it was just the steroids. 

Two days later he was so swollen EVERYWHERE and it was about 5 pounds and this was on a 1.5year old. 

It was one of the scariest day of Kirk and I’s life. From getting diagnosed, to the unknowns of this disease. We had no idea what to expect. We got the fluid off, was sent home with sticks that detect protein, a fluid restriction, everything all new to us at that time. It was all very overwhelming at the beginning. 

I had high hopes he would be better in a few days, but we ended up back in the hospital over and over again. 

Eventually, he got deemed him steroid resistant and he needed a biopsy of his kidneys. 

The biopsy results came back with FSGS ( Focal segmental glomerulosclerosis) meaning his kidneys were scarred and we knew at that time he would eventually he would need a kidney transplant. 

We also did a genetic test, which came back he has a mutation of NPHS2. We were also told everyone of our kids would have a 25% of getting it as well. Talk about a gut punch. Thankfully, Madelyn (our daughter) has never showed any symptoms. 

He started doing outpatient albumin infusions for a few months and in January of 2017, he got into a partial remission, still spilling lots of protein, but not as much as he was, and we got to stop doing all of that. We were in and out the hospital a few times over the next few years for sicknesses, a few blood transfusions (he has anemia because of CKD.) 

2019 hit and it was like a truck hit his kidneys. He got sicknesses, his kidney function was going up and down, medicine was being adjusted, and then the last month he started swelling like crazy and his kidney function decided to really decline. He got a PICC line because he had been stuck so much and was needing albumin frequently again.

His BUN got up to 120 at one point. There were so many toxins in his body. 

At this time we made a very hard decision to start him on dialysis. He got a hemodialysis line put in his neck and then a peritoneal dialysis line put in his belly. 

The hemodialysis line was temporary, thankfully. When the PD line healed we were able to get the HD line out and that made him feel better. 

He has done peritoneal dialysis since May . 

October 21, 2019, Zane had his bilateral nephrectomy. He is currently without any kidneys and is doing dialysis at home every night. We love the freedom PD gives.

He gets Epogen shots twice a week at home to hopefully keep him away from blood transfusions. 

Recently Zane had two seizures. One that lasted at least 40 minutes. We are unsure because we woke up with him seizing in the bed. This was definitely a very scary experience. He was diagnosed with having PRES. 

During this 10 day hospital stay Zane had to have surgery on his abdomen because he had a blockage and couldn’t go to the bathroom and was throwing up everything he tried to consume. 

We found out he had a hernia causing the issue. Surgeon said he had never seen what happened in 20 years. Since, he had surgery on his belly we have to wait at least 6 weeks before his transplant can happen, so it’s pushed his transplant back until at least February.

Thanks for reading! And of course we love and appreciate all the many prayers y’all give.

 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.