Support Jonah's Surgeries in El Paso TX!

Story

Where to start? Well...hello! Thanks in advance for reading our story, and considering to help support us!

Admittedly, it's uncomfortable to publicly ask for financial support, but here we are. I am an avid believer in "it takes a village", paying it forward, and we often donate and help others, when we can too. So I am going to be okay with asking for help. We are seeking support to help fund expenses surrounding our 6 year-old son's Ureteral Reimplantation, Malone, and Mitrofanoff surgeries in El Paso, TX, this coming June 2024. Between airfare costs to get our family to Texas to have the surgeries he needs, with his amazing pediatric urologist, who recently moved across the country to El Paso Children's Hospital, accommodations to be there for nearly 2 weeks, a follow up visit 6 weeks later, and healthcare costs even with insurance, it's a big financial strain. We really need to make this happen for Jonah's sake, this summer.

About Us: We are a family of 4. My husband and I both work full-time, and also are musicians, bringing in extra income on the side to take care of our family. Our lives are hectic all the time, to say the least. Our wonderful sons, Jonah and Gabe, have been the biggest blessing in both of our lives, and I never knew I could love so fiercely. I learn from them every day, admire their innocence, resilience and beautiful minds so much. Jonah and Gabe both have medically complex/special needs. I won't pretend that I am a model of strength and positive mindset throughout everything we have been through, or handle everything well. It's been hard. My husband is an amazing father, and the rock in our family, keeping us all grounded even in our hardest of times. We know we are fortunate for many, many reasons, but, I think it is okay to acknowledge that our lives the past 6 years, have had a lot of challenges too, Jonah's health being a big one. Handling both of the boys' care/needs and navigating our healthcare system has been a constant source of emotional, mental, and financial stress. We do it though. Taking it a day at a time. That's what comes along with being a parent. And we will always advocate for both of our sweet boys, and making sure all their needs are met.

Jonah was born in 2018. His big green eyes are mesmerizing. His sense of humor, quick wit, intuitive nature, intelligence and sweet/caring/affectionate personality draw you right in. He is loved by his teachers, peers, brother, and family so much. So many of us take for granted how healthy we are, and subconsciously carry on as if invincible. So, it didn't come naturally to us to worry something was "wrong" with Jonah right away. If the doctors weren't worried, then we weren't either. Where would Jonah be if we had taken him to a specialist sooner given his symptoms, got a second opinion, or pushed harder with his specialists on getting certain testing done sooner?

Between ages 2 and 3, Jonah was constantly constipated. Every bowel movement he was crying in pain, and couldn't go to the bathroom without Pedialax suppositories. After months of daily Miralax, a bunch of horrible tests, a hospitalization for a bowel impaction that involved a feeding tube being placed, mishaps in the hospital that traumatized all of us for the excruciating pain he went through, the specialist still agreed that nothing was wrong with him other than being chronically constipated and believed this would get better as he got older. He kept him on his daily Miralax regiment and felt nothing more was needed. Not until a friend of ours saw a post of mine on social media describing our experience, and her own son having had what ended up being the same thing as Jonah, did we learn about Tethered Spinal Cord syndrome. And later on, level 4 Vesicoureteral Reflux, neurogenic bladder and neurogenic bowel as a result.

While rare, Jonah exhibited so many signs of tethered cord syndrome, including a blatantly obvious large birth mark at the base of his spine, which had been overlooked for nearly 3 years. If you didn't know, sacral dimples, tufts of hair, and large birth marks at the base of the spine can be an indication of a tethered cord. We immediately demanded the GI doctor refer him for an MRI. I was called "Dr. Google" in the process, informed that this was unnecessary and so unlikely, but that he would request it for our peace of mind. A few days after Jonah's MRI, the results were posted on the patient portal and I was unfortunately notified automatically, around 5PM on a Friday. I will never forget that day. I was driving to pick up dinner in a torrential downpour and when I pulled into that parking lot and read the results, I couldn't believe what I was reading. Sure enough, he had a tethered spine, in addition to level 4 kidney reflux, a very distended bladder, and a duplex kidney system. In a panic, I blew up the hospital's phone numbers, got the on-call doctor involved, who got ahold of the GI specialist, who was at dinner and about to go to the opera, to explain this to me.

The following Monday, Urology called, and said he needed to be seen right away. We didn't know at that time, how upside down our world's would turn, in one hour at the urologist clinic, and more importantly, what Jonah was about to go through. It turned out, that he wasn't even able to pee on his own anymore. He had a neurogenic bladder as a result of the the tethered spine. We hadn't really noticed any signs with his bladder. He had a dry diaper every morning when he woke up lately, and we mostly thought that was because he was ready to start potty-training soon. Little did we know, that the tethered spine he had this whole time, had caused neurological damage to the point he wasn't going to the bathroom on his own anymore. Evidently, his bladder was sort of just collapsing and emptying when it became too full. They explained that Jonah would immediately need to be intermittently catheterized, every 3 hours, and once overnight, would need medication (with bad side effects,) to control reflux and daily prophylactic antibiotics to prevent infections from all the cathing. In one visit, we were taught by a nurse one time, how to stick a lubricated catheter into our screaming 3 year old son's urethra, to drain his bladder. He would no longer be allowed to try to void on his own. We would repeatedly have to put him through this painful trauma, with no medical help at home to aid us as we learned. We were told that after a while, it wouldn't hurt anymore. But, he would also need to be seen for urodynamics testing to see how his bladder, urethra and sphincter all work together to control the pressure and voiding of pee. I will spare the details of that traumatic and unsuccessful first experience. Jonah ended up in the hospital with a kidney infection from it, not even two days later, and a room full of nurses who couldn't catheterize him in the hospital either. We also got a horrible stomach virus while we were there, and had to get special approval due to COVID restrictions to relieve my husband and I as being his primary caregivers while there. It was an absolute nightmare.

I should pause on blogging Jonah's detailed story to talk about Jonah through all of this. Jonah was an absolute champion. The strongest kid I know. I wish you could hear him talk himself through unpleasant things. Last summer, he had a follow up Nuclear GFR test, that involved an IV on top of his hand, which he has undergone many times, but usually those things suck for kids especially. If you don't like getting an IV or needles as an adult, being pricked a bunch of times when they can't find their tiny little veins, is really hard for little kids. But for the first time, he didn't even flinch. He talked the nurses through what they were going to do, down to knowing what the needle was called that they use. I was blown away. By the age of 5.5 years old, this kid would have gone through more medical procedures, testing, traumatic hospitalizations than most of us in over half our lifetimes. Learning from each experience, and being able to find this magical way to cope, accept, and get himself through it without making it harder on himself or everyone around him trying to help him. He is so brave. I know he will overcome anything thrown at him in life.

Long story long, my friend got us in touch with their son's urologist, who at the time, was out of a hospital within a reasonable driving distance, and specializes in conditions just like Jonah's. People from all over the world with kids that have spina bifida and neurological conditions from tethered cord flock to see him, because he is the guy who fixes the botched surgeries. He saves countless children's kidneys from needing replaced with his way of treating these conditions.

Dr. Alam called us from his personal phone while we were in the hospital for Jonah's first kidney infection, to tell us what to look out for, what to do before he underwent his spinal surgery. He wanted us to come see him before we proceeded as well to do urodynamics again (done the right way) and he wanted us to also do home-made enemas daily for bowel management and get rid of the Miralax daily, explaining how equally important that was for a child with Jonah's condition. No more burning suppositories, daily "sprinkle water", just an enema with saline made at home, and castile soap administered through a Foley catheter. 45 minutes later and he's done, and no longer constipated or needing to go to the bathroom for 24 hours. He looks forward to this time daily actually. He gets to chill, play video games or watch movies.

Dr. Alam is uniquely well-versed in both bowel management for neurogenic bowel and neurogenic bladder, making coordination of all his care so much easier. He even gave us advice on things that hadn't been brought up or asked of us, that are somewhat critical to the success of spine surgery even. We were blown away by him. If you find a really good, passionate and charismatic doctor that goes above and beyond the norm for a complex medical condition, KEEP THEM. NO MATTER WHERE THEY GO. Dr. Alam changed Jonah's (and our) life around for the better during this process. I truly don't know where Jonah would be without him. I had lost so much hope and trust in the hospital systems in our area on managing our son's care properly, communicating with us and interdepartmentally and felt helpless in trying to get him the right care. Here was this tiny person, who needed his mom and dad now more than ever, and we had no idea what to do. Dr. Alam swept us up, carried our family the rest of the way, and is saving Jonah's kidneys. After seeing Dr. Alam and his team, being trained properly on his care, and leaving 3x as confident, and the subsequent successful spine surgery Jonah had locally, Jonah became stable, happier and healthy again.

Through the last few years, he has had some ups and downs with repetitive UTI's and kidney infections, some decrease in kidney function in his right kidney, some thinning and scarring, all to be expected with a catheterized person with VUR, but we have known he has been with the right person to manage his care. However, Jonah's level 4 reflux came back as of March 2023's annual testing, which means that his reflux is secondary, and it would require surgery to stop the reflux. We expected this might be in his future, as Dr. Alam warned us that it is common to need it, but as a conservative surgeon, he monitors and waits things out for a few years post spine-surgery, to see how his conditions progress/change, before deciding to perform surgeries on unpredictable neurological bladders. Having recently gotten the final go ahead to book surgery and get pre-authorizations in for insurance, we were able to secure a date for June 25th. Dr. Alam is able to perform a ureteral reimplantation surgery without opening up the bladder. He says opening the bladder decreases it's capacity and often makes reflux worse, and his way of doing this is different than most surgeons. I won't try to explain why or how on here, as I am definitely NOT a doctor. We trust him implicitly. He also is one of few doctors who will perform both a mitrofanoff and malone surgery at the same time, which means he gets all three surgeries by the same doctor, while under anesthesia one time.

All of this will occur in El Paso in June 2024. The mitrofanoff and malone surgeries will improve Jonah's quality of life with the expected lifetime of cathing and daily enemas he will need. It will make him be able to be independent, discreet, faster and more efficient, and gain confidence and acceptance of his conditions as he gets older. I am bad at explaining this, but the surgeons use the appendix to create stomas around the stomach/abdomen area to access the bladder and colon. The mitrofanoff stoma can be catheterized instead of through the urethra, which is often difficult to get through, and to administer enemas through the malone stoma, rather than the rectum (which I am sure you can imagine would be difficult to do independently).

While we are relieved to be in a position to get Jonah these surgeries with the doctor we trust, after he changed Children's hospitals and moved across the country, the costs involved to travel this far, and for this long, are much more than we expected and can comfortably afford along with our other financial responsibilities. Every little bit helps, and I hope you like the shirt and cup to go with your donation! Help spread awareness of tethered spine syndrome, and neurogenic bladder. Some people don't even know until they are adults and lose a kidney! I educate as many people as I can and hope I can help one parent know what to look for so they can advocate sooner.

We appreciate your support and thank you for reading all of this.

P.S. - Ironically enough, my cousin's son Gideon is getting an even bigger surgery done on his heart, one week prior, also across the country from where they live, for his rare conditions too. Gideon also has a cause page. If you can, please consider donating for them too, or even just sharing his page

https://www.causeteam.com/causepages/detail/gideon-the-braves-heart-surgery

Thank you SO very much!

PLEASE NOTE: For more size options on the sweatshirt, please reach out directly to Causeteam amanda@causeteam.com