Jen's Story: You Don't Know OUR Story
August 27 2021
August 27 2021
Where do I start?!
Long story short: my teen years sucked. I have a cleft lip and palate and dropped out of high school at 16 because of bullying. I had my first daughter at 18, but gave her up for adoption (she will be 18 in June). My mom, my best friend, died when I was 21. At 25, I started college and lived with my grandmom. I had my first son that year. His dad had his own issues, so it was just me, him and my grandmom who he called La La.
I met my now hubby in 2013. He had a son who was 5 at the time, that also had a cleft lip and palate. We lost a baby that year, the day before thanksgiving. In October 2014, we found out we were expecting a baby boy. We also found out he had some medical issues. He didn't have a right kidney at all. The left kidney and bladder were too small and his ureter (connects the kidney and bladder) was too big and had a blockage. The doc looked at me and asked, "Are you okay? You seem to be handling this very well". I looked at him and asked "Is my baby going to die?" "NO" he replied. I responded "Okay then." The way the doc made it sound was he would need a surgery or two, then be good. Boy was he wrong.
In Feb 2015, we had our baby boy. He wasn't breathing and came out blue. We knew he had kidney issues, but this was worse than expected. They got him back after an hour. I finally saw him in an incubator with a breathing tube down his throat. His little eyes looked at me and it broke me. He had his first surgery at 23 hours old to place a nephrostomy tube (goes into his kidney to drain it). Then he had an NG tube placed (feeding tube in his nose). He also has high potassium, which is called Hyperkalemia. At this point, his potassium intake was extremely limited. His formula took an hour to make because I had to add medicine to bind and remove the potassium. He can never have banana flavored anything. If he ever ate a whole banana, it could cause him to have a heart attack. We also do not give him banana flavored anything because we do not want him to like it.
3 weeks later I took him home after learning how to properly clean a sterile site (nephro tube) and insert the NG tube. Surgery a few weeks later to take out nephro tube and clear blockage. The next 12 months consisted of infections, week long hospital stays and another surgery to create a vesicostomy (bladder us opened up to drain and brought to the surface of his belly). Oh yeah - and I'm pregnant again.
My daughter had the exact same due date as my son but one year apart, Feb 19th. October of 2015 we were told its a girl - FINALLY! I have gestational diabetes again and there is a good chance she has a cleft lip and palate.
In Fall of 2015, we began discussing placing a g tube (feeding tube) in his belly. We decided for April. We also decided to create a ureterostomy in the same surgery.
In Jan 2016, my son had another infection. It was the worst infection he had ever had. It caused his kidney disease to go from stage 1 to stage 3 and I was told, at 8 months pregnant, to start preparing myself mentally for dialysis and a transplant. While he was inpatient, I did not have my insulin with me and ate what and when I could. After we got discharged, I went to the Dr. and they scheduled my induction the next day.
My blood sugars were so high they were afraid she would be stillborn. I was admitted Wednesday morning and had an emergency C section Friday night. She was technically a preemie. She did have a cleft lip but her palate was intact. Thank god. That was the end of Jan 2016. In March of that year, myself, hubby and oldest son all got norovirus (24 hour stomach bug). My son got it and ended up in the hospital for 3 weeks. At 15 months old, he weighed 13 pounds. He had g tube and ureterostomy surgery scheduled for the third week. The second week they put an NG tube in and I ended up having a 45 minute panic attack. I was upset because they did it and told me after and that I wasn't there for it. The next week he had surgery and an added hernia repair and came home in the middle if April. On May 6, he ended up in the ER because his vesicostomy prolapsed (bladder began coming out through the hole) and needed emergency surgery. 11 days later, my daughter had cleft lip repair in the same hospital.
After all that he was good for a little while, but in 2017 he ended up in the hospital after having an allergic reaction to a medication that he had been taking for 2 years. He had red blotches all over his body and they thought he had TEN. That is toxic epidermal nephrosis which is where a reaction causes blisters all over the body and they pop, become infected and can make you septic. It is extremely serious and can be deadly. Luckily he did not have that. Just a very bad reaction. My grandmom and myself are both extremely allergic to this med. I couldn't even give it to him with out gloves.
After that - everything was good for a while again until he was diagnosed with high blood pressure which is common for kids with kidney disease. He started losing his hearing and needed tubes. However, after seeing an ENT doctor, we learned that he will continue to lose his hearing and will need multiple sets of tubes. He also got kidney stones which are still there hanging out today. In the spring of 2020, we began discussing reversing his ureterostomy. It was either going to work and he would hopefully be able to hold off for a transplant until around his early teen years or it wasn't going to work and he would begin to go into kidney failure sooner than we had hoped. It has to be reversed at some point, so why not just do it now. The longer the bladder is not in use, the worse it gets and the greater the chance it not work; basically use it or lose it. It had been out of commission for over 4 years at that point. After surgery, he would have to learn how to use and control his bladder. They compared him to a new born baby.
In June 2020, he had it reversed. While in there they looked for the kidney stones, but were unable to find them. He had to have a stent put it and 2 drains. One to relieve any fluid build up and the other with a clip so I could help release the urine when needed. 3 weeks later he had a second surgery to remove the stent and the drains.
At first all was going well. Then his labs showed his levels were rising again which wasn't good. In December 2020, someone close to me took my car to get serviced. On the way home, my car was totaled. He hit a truck which sent him airborne and the car rolled a few times after it hit the ground. Luckily he walked away from the accident and wasn't injured. My car, however, wasn't so lucky. The next day, my son had a doctor appointment. We were told at that visit, that his kidney was beginning to decline and he was going to refer us to the transplant team with in the next 6 to 12 months.
The following week my new (to me) car was stolen from the repair shop I had taken it to for a tune up. It was found 2 weeks later, but had so much damage it was a loss. At his next appointment in March, his kidney had declined so much in that short period of time, that he doctor referred us to transplant that week.
We began our transplant journey on March 31; the last day of kidney disease awareness month. I have been throwing myself into planning awareness events, and I made posters letting people know he needs a kidney and the email if they want more info. I am trying to do everything I can think of to find him a kidney.
Its just unfair that he has to go through this, however the amount of courage and strength he has amazes me. He's my hero.
Its now August and his kidney is only functioning at 21%. He had his first infection in 5 years in July and almost ended up in the hospital. We have a dialysis meeting set up so we are prepared if the time comes and we have completed almost all necessary testing to receive a new kidney and are actively looking for a living donor with an O blood type. We are also currently inactive on the deceased donor list and he will be activated if he gets more infections or his levels rise any further. For now we just do what we can to get his name and story out there in hopes of getting him a kidney. He has a FB and Instagram and his dad and I have turned our vehicles into billboards!
A few months ago, I came across your clothing. It was so amazing and just..... Perfect. One of the first things I bought was the purple tie dye "You Don't Know My Story" hoodie. I pretty much live in it. However, the Angel Collection is what really caught my attention. I feel like I have the universe on my shoulders sometimes.
Watching my child go through this is one of the hardest things I've ever had to do. At times I do feel broken. At times I want to kick and scream and cry - and I do. But, then I get back up and remember that he is stronger than this and I get my strength from him.
This whole experience has changed me. Its made me realize how short life really is. Its taught me that its okay to let go of grudges and rebuild or mend relationships with certain people because my son needs an army behind him; even if it means stepping out of my comfort zone and putting my pride to the side. Even if it means I am a Beautiful Disaster.
Sorry for how long this is. Honestly, it felt good to get it out. My favorite saying is "You don't know how strong you are until being strong is the only choice you have." I never realized how much one person could go through with out breaking until recently. No matter what I have to handle, my 6 year old is even stronger. Everyday I thank god that I get to be his mom and take this journey with him.