On May 15th, I made my 11 year old son an appointment to be seen by his pediatrician. A few days prior, he had a headache that lasted two days. I decided that I would go ahead and back him an appointment to discuss a few things that I had noticed in him. He seemed to have leg cramps several times a week which I just assumed were "growing pains". He also seemed pale in color and had somewhat of a lack of appetite. I figured, if anything, he might be anemic since my toddler was also anemic a few months prior.
My husband took him to his appointment where the pediatrician did a urinalysis which popped up with blood and protein in it. She sent them to do labs as well and told us to hang tight by our phones as she would call with the results. My husband is a registered nurse and he knew that something wasn't right. A few hours later, my phone rang with the pediatrician telling us he was in advanced kidney failure, he needed dialysis ASAP, and we needed to drive the 4.5 hours to Cook Children's hospital in Fort Worth hospital. She asked me several times if I understood what she was saying and I kept replying "yes". Truth be told, I was in shock and really not understanding anything except we needed to hustle to make the drive. She told us we could have him flown over there but it would be dramatic and possibly scary for him. She was confident that he could make the drive.
It took us a few hours to get everything squared away at home. I have six children and it's just not easy to pick up and leave on a whim. Hell, we didn't even have a vehicle to hold all of us at one time so we were busy packing both cars to make the drive. My mom eventually called and said she would drive down to our house to watch the older three. Once we got our bags packed, we threw them in the truck and loaded up my 11 year old son Canyon along with my 3 year old (Zinn) and my 19 month old (Holden). We drove in silence. I knew it was bad based on my husband being so silent. I didn't really know what was going on and tried not to google. I really thought we would get to the hospital and everything would just be okay. Or perhaps, he would just need one round of dialysis and he would be "cured". I obviously had no clue about how important the kidneys are.
We arrived that evening and went to the emergency room at Cook Children's. I gave the front desk the lab work that he had done that morning which showed kidney failure. We waited about two minutes before we went back to triage. They redid all of the labs, urinalysis, and did a renal ultrasound. They checked for a strep infection which can mess with the kidneys but that was quickly ruled out. By 1am, we were being admitted into the hospital for kidney failure. The renal ultrasound came back with abnormalities.
The next morning, the nephrologist walked in and introduced himself. He asked Canyon if he had ordered breakfast. We replied no as they ordered him not to eat or drink overnight. He made sure that Canyon got some breakfast before sitting down with us to break the news of what was going on.
The diagnosis was end stage renal failure, chronic kidney disease stage 5, and anemia. The treatment would be dialysis and eventually a transplant. There isn't a cure for this. This is life long. This is life changing. This devastated me. I cried. My husband cried. My mother in law cried. Canyon cried. I still didn't really grasp what was going on but hearing the word "transplant" made me know that this wasn't just a simple thing to fix.
We stayed in the hospital for exactly 7 days. During this time we started a regime of different medications to help his kidneys and treat his anemia. We decided to do peritoneal dialysis as this was something we could do at home while he slept. He would have to do a surgery to have the PD catheter placed as well as a kidney biopsy to figure out exactly what happened to his kidneys. We were trying to avoid a blood transfusion because of a future transplant but we had no other option except to do a couple of transfusions. He needed the transfusions for the surgery. On May 20th, bright and early that morning, they wheeled him back for surgery and the biopsy. The biopsy samples were great - they had good cores and were sent off to pathology. The PD catheter was inserted and we were quickly reunited with him. It was tough for me to finally see the catheter in him. I cried a good long time that evening at the Ronald McDonald house. It was hard seeing my baby going through so much and I wasn't able to do anything for him. I wished so many times that I could do it for him. I wished that it had happened to me and not him. He is only a child. He has his whole life ahead of him.
Two days later on May 22nd, we were discharged to the Ronald McDonald house. His labs were stable and his catheter site was healing well. We opted to stay that entire next week at the Ronald McDonald house so we could do our peritoneal dialysis training that week before heading home. Because his labs were okay and stable enough, the doctors decided to hold off on dialysis for a couple of weeks so the site could heal properly. Dialysis training was intense and full of emotions for me. Sometimes I had strength and felt like I could do it. Other times, I broke down. It was a lot to learn and process. We had to fill out medicare paperwork for him. Medicare for an 11 year old. We had to talk about SSI as he could qualify. I had to learn how to work the dialysis machine, give him shots, order supplies, change his dressings, treat infections, and also how to revamp our diet.
On the night of May 24th, Canyon woke up suddenly crying out in pain. He had a headache and no matter what I said to him, he wouldn't calm down. My husband and I decided to take him to the emergency room where we discovered that he had high blood pressure. The entire week before his blood pressure was great - and now - at night - it wasn't. The high blood pressure gave him symptoms that included headaches and nausea. He kept saying, "I just don't feel right. I don't feel right!" So, that night, we began blood pressure medicine.
We finished up all of our training on the 26th of May and were able to go back home. We loaded up our truck with so much more than what we originally came with. Now we had boxes and boxes of medical supplies that included antibiotics, needles, gloves, masks, dressing stuff for his catheter, etc. As happy as I was being able to go home, I was also scared. Our treatment plan would include monthly visits back to Fort Worth to check his labs and evaluate everything. They can not treat my son locally. The first thing on our list to do once getting back home was looking for a bigger vehicle that could seat 8 people comfortably AND cart dialysis equipment easily. On May 29th, we found a ten passenger van for sale which was HUGE but something that the kids could ride in comfortably and we would have room for all of the medical equipment we would need. We signed the papers on that and checked that off of our list. The second thing was switching bedrooms around in our house. Canyon's old room was across the house from our room. This obviously was not ideal because we wouldn't be able to hear any alarms at night on his dialysis machine. I gave up my office/guess room to Canyon so he could be right beside the master bedroom. We checked that off of our list. Last thing was getting ready for our first dialysis supply delivery and figuring out where to store all of the stuff at in our house. I was amazed on how much you need monthly for dialysis. Those bags of fluid are pretty big and heavy. You also need drain bags, cassettes and tubing, along with extra caps for his catheter. I'm glad our house is relatively big and we are able to keep the majority of the supplies in our laundry room.
I must say that Canyon continues to impress and inspire me. His attitude about all of this has been amazing. He will say things like, "Well, it has to happen to someone so it might as well be me!" He doesn't appear to be angry or mad about it. I try very hard to be positive and optimistic around him. Our new diet change isn't negative - it is positive. Limiting sodium, phosphates, and potassium are good things in the long run because it makes him feel better. Him feeling better is our main priority! Every once in a while he would ask why it happened to him. I never really had a good answer for him except to explain statistics. Sometimes it is completely random. It sometimes just happens.
On June 5th, we ended back up to Fort Worth for the start of dialysis, nephrologist visit, lab work, VCUG procedure, and to meet with the urologist again. During the nephrologist visit, we went over the biopsy results. They sowed that he had focal segmental glomerulosclerosis - or - FSGS for short. FSGS is a rare disease that attacks the kidney’s filtering units (glomeruli) causing serious scarring which leads to permanent kidney damage and even failure. They firmly believe this is something he has had for a very, very long time. I believe this is something that he has had since birth considering he has had slow growth patterns his entire life. He had no symptoms of this. They said because it's been so gradual - his body has compensated and in turn, Canyon didn't even notice how bad he felt because it has been so gradual. The biopsy also showed urine outside of the kidneys which is why they ordered a VCUG procedure. However, that didn't show any urine flowing back up into the kidneys so they came to the conclusion that urine flowing back up into the kidneys caused the damage. We will not have to visit with the urologist again unless we have any issues so that was one good thing! One less doctor to see. We went over his current lab work and based on those numbers, they decreased a bit of his meds which made Canyon really happy. We also got the green light to start dialysis!
The first night of dialysis was pure hell. The alarm went off every 30 minutes. We were miserable. At about 4am, we gave up and stopped the treatment for the night so we could get some sleep. They changed some of the numbers for his dialysis therapy and the second night went SO much better. It's been over a week of dialysis now and it's been so smooth. We might get one or two alarms a night which are easily fixed. Canyon is handling this like a champ. His catheter site looks clean. He isn't experiencing any pain. He has even mentioned that he feels better! I have noticed an increase in energy. He isn't sleeping as much - he's running with his siblings and friends - he's jumping on the trampoline. He isn't complaining about his diet and he knows how to read labels on food now. The hardest part for him is the meds and the EPO shot but .. he does it. He might complain but he gets it done.
We go back up there in two weeks for another visit. This is our new "normal". I'm a parent of a child with a life threatening condition. My child will be on dialysis for the rest of his life unless he gets a transplant. Even a transplant is not a cure. I am constantly reminding myself and Canyon that we have to take it one day at a time. Just one day. We can't think about the past and we certainly can't think of the future. One day at a time.
I would like to thank everyone for their support during this emotionally draining period of our lives. From all the cards and packages being sent to us to the countless donations that were made. We truly appreciate each and everyone of y'all. I will keep everyone posted about the transplant process when we reach that point. We are not there yet. Our main focus is getting him stable on dialysis and making him healthy enough for a transplant surgery. It will be months and months before we get there.
If you would like to donate to our GoFundMe page for Canyon, it is here. We have a long way to go so everything little bit helps!
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I will be making lots of updates on this blog to try and get our story out there. In the mean time, if you are not an organ donor, please consider becoming one. Every day, lives are saved and improved by the gift of life, sight and health.