A Mother's Perspective

Evan's kidney transplant is scheduled for Wednesday, March 21st; 17 days away. We'll be the first and only case that day for the team. My donor surgery is to last 3-4 hours; Evan's to last 6-8. Evan will be closely monitored afterward for two weeks and is expected to stay in the hospital for a month post-transplant.

Evan starts a rigorous schedule of immunosuppressents tomorrow; two weeks and a few days before the date. This is one week more than most transplant recipients and much higher doses than the norm.

He's to be admitted on March 14th, one week before, and will undergo two, possibly three, plasmapheresis treatments among many other intricate preparations. His plan is very detailed and the course of treatment will be determined by many ever evolving variables. What we concretely know is we have the best Surgeons and Doctors aligned and this team has plans A, B, and C through X, Y and Z. As stated in previous posts this transplant isn't straightforward and is extremely high risk; however complex this procedure is, we have been offered hope. He is going to be given this opportunity, and a chance at life.

Without a transplant Evan isn't guaranteed much time here on earth. With one though, Evan is given a life and the prospect for a long one at that. Once successful it's believed this kidney, an almost perfect 5 of 6 antigen match, will last for up to 30 years. That right there, that glimmer of hope, that's surely something to hold on to.

From even before Evan was brought into this world we were given very grave and finite scenarios. Time and time again we've been offered little hope and frightening solutions, but little hope is all we ever needed. From the beginning, his father and I made the decision to stay present, productive, and positive. Some days it's a bit easier to stand by our choice. Other days it's a struggle, but our decision and the work it takes to follow through, is the only thing we have control over. It's hard for me to accept the fact that I cannot fix everything; snap my fingers, and make my son all better. It's not something I can easily turn over, but I do it daily. I must.

You see Evan doesn't realize his life is any different than yours or mine. He's by nature a happy boy and loves his life. He has fought diligently and defied medical laws time and time again to be here. He has no idea of the magnitude of his journey and what lies before him. He shouldn't have to worry about all of that; he's a two year old boy. It's his job to be a toddler and it's mine to ensure he stays the course. I owe it to him to strive to be at my best every moment; worry has no place in the game plan.

Evan and the family have been in lock-down for a few days now and it's heightened even more so starting tomorrow. We've been following Doctors's orders to avoid the public and as his donor I've done everything expected of me. Any tasks the Doctors request of us is met, but there is a something that separates our family from others before us; our decision to remain focused, positive. To carry out that notion creates this idea of limitless possibility. By that I mean this: upon learning of Evan's transplant I chose to fight as hard as I possibly could for him. I did whatever I could think of. I still do. I didn't just think; I took and continue to take action. Here's how:

1. Communicating our specific needs, leaning on others and asking for positive thoughts and prayer from anyone who willing to help.
2. Creating wristbands for people to wear asking the recipient to simply think of Evan every time they glanced at it and share his story with others. We've distributed over 500 of them so far.
3. Going online and placing Evan on prayer lists around the world. Ensuring services will be said in his honor.
4. Asking others to have mass, a service, worship directly in Evan's name.
5. Designing tee shirts and asking others to wear them on Evan's transplant day as a symbol of solidarity. The goal being, every single person who sees that shirt on that day will think of Evan. They may not know what the shirt is for, but I believe getting them to purposefully notice it will catapult them into our field of consciousness that day. We've sold 179 to date. Envision how many people you see in an entire day, multiply that by 179! Every family member and friend in hospital transplant day will have a shirt on. Imagine the buzz that alone will create; it's limitless!
6. Working with alternative medicine via a Qi Gong Master, Psychic, and team of healers.
7. Creating lists of songs to play to Evan now and when he's in the hospital. Reading the same stories. Making sure there are the familiar patterns developed to establish a calming environment. Taking pictures of things he enjoys so he can have a link to the outside world. Creating a scenario that will feel as normal as possible.
8. Telling Evan every single day multiple times a day how much we love him. Letting him know how strong he is and how much he has accomplished in his life.
9. Indulging Evan in his interests and ever expanding his awareness and accessibility to those things. Allowing him to fully enjoy his life.
10. Meditating, exercising, eating well, enjoying family time, creating the most healthy and peaceful environment we can in this moment: resting, simply existing in this space.
11. Vacuumming, bleaching, washing, and Lysol-ing every single surface in the house (including walls, ceilings, screens, switches, accessories). Instilling clean practices. Antibacterial soap for hands and dishes, new sponges, masks, gloves, air purifier, taking apart the vacuum and removing all old dust. Buying a lockable box to place all shoes in upon entering the house. Carrying antibacterial wipes and gel. Ensuring not one precaution is missed.
12. Initiating and creatively working to increase Evan's protein and caloric intake while balancing his fluid intake with his blood pressures.
13. Communicating every scenario I can think of with his transplant and dialysis teams. Being an active and instrumental part of his team.
14. Making list after list after list to ensure we are always productive and always moving forward.
15. Participating in a voluntary transplant program provided by the insurance company. This one fell right in my lap. When working diligently fortune often does align seamlessly in one's path; preparation meets opportunity.
16. Not worrying about things out of my control such as the surgery; and the money needed to pay for our expenses while he's in the hospital; or anything I miss in my preparations. Trusting every need will be met. Everything we need will be provided and any energy spent on intangibles is energy wasted.
17. Continuing to give back to others. It's with our deepest gratitude we are all alive in this moment and it's important to always give to the universe what we receive or need; the law of reciprocity is ever evolving.
18. Taking the time to ensure you have the information you need to be of the best service possible to us. If people want to help I need to ensure we utilize you in the best way we can. It's important to give to you if we are to expect anything in return.
19. Making sure you understand how much we love and appreciate you and your efforts. Without the masses, what Evan does, what this family does, would not be possible. You're an integral part of the team. Thank you for always being there.
20. Continuing to take the next indicated action, whatever it may be. As long as we've moving forward, as long as we're doing everything in our power, the answers and support will come. They always do.

It's interesting really; by admitting I have no control, by accepting the things I cannot change, I am given this world of unending possibility. I am inspired! Do you see the distinction? Yes, there are many tangible reasons why Evan's transplant may not be successful; but I assure you there are many, MANY, more intangibles that makes it's success almost certain. I will continue to do everything in my power to increase those odds. I will continue to turn over all worry and doubt and anything else mucky that comes up. I will daily, hourly, however many times I need to. I will remain in this moment only. In this moment, there exists unlimited potential. Today, like every single day of my son's 2 and 1/2 year life, is a beautiful day. Today, is now, it's all there is and ever was; and it's perfect.

Dialysis Complications

Evan has endured 17 surgeries. Most attributed to complications of dialysis, a necessary treatment to sustain Evan’s life until he’s ready for a kidney transplant.

There are two types of dialysis:

1) Peritoneal Dialysis (PD) - basically places a sugar water solution into the cavity that houses your organs. The solution attracts fluid from the body and the lining of the cavity acts as a natural filter. It's a super gentle method where you put the solution in via a catheter, allow it to sit for a while, drain it out and repeat. You continue to do this for however long is needed; usually anywhere from 8-14 hours. It's done everyday and can be done at home. The downside is that body cavity has no antibodies, so you can't get dust, dirt or anything in there or you'll get violently ill. It's a clean technique, as close to sterile as possible.

2) Homodialysis (HD) - this is done at a center, for the most part. For babies it's rare to find, but certain hospitals will do it. There are two in the LA area that provide outpatient HD. HD takes the blood out of your body, runs it through a machine to clean it and returns it back to you. A treatment runs usually from 3-4 hours. People are usually dialysed 3 times a week. This treatment is exhausting, harsh on your body and drastic changes can happen. One can experience cramping, the feeling of falling, and their blood pressure could drop so low they go comatose.

Our first choice for Evan is PD. Unfortunately, Evan’s body attacks peritoneal dialysis catheters; he’s had 4 fail, endured multiple revision surgeries and numerous complications. PD just doesn't work for Evan; fortunately HD, does.

Evan received his first HD catheter on January 21st, 2010. The next day he was transferred to the PICU of another hospital, the “Best in the West” for Pediatric Nephrology. He participates in 3 hour treatments 4x a week. Babies are fragile, especially when it comes to HD. I've seen him cramp, shake and scream in pain. I've watched him go limp when is blood pressure's bottomed out. He's lost his internal right jugular vein due to scar tissue from two HD catheters and is on his 3rd catheter, threaded through the left internal jugular.

His care is complicated and he is fragile, but he’s continued to thrive. In spite of everything, his life is full of love and positivity. He doesn't understand that what he goes through is any different than what we endure. His trips to dialysis for all he knows are equivalent to going to Grandma's. The staff treats us like family and really makes the best of his situation. He's their baby. We're truly blessed to have the resources and team that we've been given.

And the end is in sight. Evan has reached the weight necessary for transplant. He's been placed on the transplant list and undergoing his work-up.

The Beginning

Evan's story as featured on www.prayersforevan.org:

When Evan was 21 weeks in the womb Evan's parents were informed he had kidney failure, causing low amniotic fluid levels, making it impossible for him to form lungs. They had three weeks to decide whether to terminate the pregnancy. They saw five High Risk OBs and all had the same prognosis. One simply stated, "don't even pray for a miracle." At the time Evan had begun kicking actively and his parents-to-be decided to celebrate their child's life while he was still present rather than morn the loss of their unborn child. If they only had him in the womb they would cherish the pregnancy and as long as their unborn child fought to live they would support him. They started to work with Eastern healers: a Qi Gong Practitioner, Acupuncturist and Herbalist. Most importantly they turned it over to the care of God, meditated, prayed and asked for prayer from others.

On August 31, 2009, at 32 gestational weeks, Evan was born via c-section as the umbilical cord wrapped around his neck three times. Weighing in at 3lbs 10oz, Evan was born with a malformed right lung and collapsed left lung. At the time he was on pressurized oxygen heading to a ventilator. His parents were told he wouldn't last 24 hours. The Drs explained there was nothing they could do and offered their condolences. That night, without any medical intervention, his collapsed lung healed itself. Three days later he was breathing room air on his own. To this day the Doctors can offer no explanation.

Evan was born with a VACTERL association which includes radial aplasia (his right arm is missing the radius bone) and a malformed urinary tract (he has a small, non-functioning bladder; a missing right kidney; a multi-cystic dysplastic left kidney that has failed; among other urological defects). In general, the right side of his body never formed properly and he has multiple anomalies; some requiring surgical intervention. The Genetics teams at two accredited hospitals attribute the above-mentioned to a spontaneous genetic mutation, “just a fluke”.

Evan spent the first 168 days of his life between two hospitals; enduring 10 surgeries and multiple complications. All but two weeks of his hospitalization was in an ICU.

On February 14th 2010 Evan was discharged from the hospital and able to come home for the first time.