Spica be Gone

Tomorrow morning, after 15 weeks, Evan will be without a Spica, full body, cast. He'll be fitted and placed in a brace for a month and after that he's free to learn to sit, crawl and walk. It's a good feeling to be on the opposite end of this journey; to know that he's almost free to develop like any other little one. In the final moments of the Spica I can't help, but look back on this experience with complete gratitude and a full heart.

Not long ago a boy born with a malformed hip would be forced to walk with a gentle limp; doomed to have severe arthritis; and eventually need a hip replacement by 30. His quality of life would be altered. Sports would definitely be out of the question. He would always be aware of his hip. Fortunately today that same boy can undergo a surgery, or two; two casts over a period of 15 weeks; a brace for a month and rigorous Physical Therapy. He can battle through all that before his 2nd birthday and be free from pain, limp, arthritis and any limitations. How lucky we must be!

A toddler in a full body cast, particularly during the spring and summer months, is no easy feat. There are many issues to address: his emotional well- being; his comfort; keeping him stimulated; providing him a sense of freedom; transporting him; and positioning to allow him to sit, sleep and play.

Emotionally I couldn't prepare Evan for this journey. He was standing and crawling one day and in a ton of pain with a cast from nipples to ankles the next. His reaction was intense, but it only lasted two days. He just accepted the situation and smiled through the entire process. To say we're blessed is an understatement. Keeping a growing boy stimulated and happy meant sacrificing some time. So the house was a little messier, or dinner wasn't on the table when his Daddy arrived home from work; those sacrifices were well worth the reward. The extra time, extra smiles, and all the kisses and loves I shared with Evan were some of the greatest moments of my life.

Making him comfortable throughout the day and while he slept consisted of many pillows, blankets, belts and even exercise bands. Creativity was key in this situation! Transportation was settled by a purchase of a new car seat that could accommodate the cast. Luckily insurance, after some prodding, paid for our seat. This seat, a Britax Hippo, was an incredible asset and we highly suggest this to others in our position. Another valuable asset, that is if you want to grocery shop; walk your dog; or go anywhere at length, is an infant carrier. Ours is a gently used Baby Bjorn that we picked up at a Children's Orchard. I used this carrier multiple times a week and really feel it gave Evan and I a sense of normalcy. We enjoyed many wonderful moments with our Baby Bjorn; it truly fueled our freedom.

Our biggest challenge with the Spica was cleanliness and keeping Evan comfortably cool. Anyone with a little one will understand that poo is often explosive and vomit can sometimes run a plenty. These things happen. Unfortunately they soil the padding and create an unsafe, uncomfortable and smelly situation. On average I was pulling out all the padding I could and replacing it 2-3 times a week. This process takes about an hour and is absolutely not fun for the little guy in the cast. Afterward though I could always tell he felt better. Luckily we had all the supplies we needed: moleskin for the edges, Microfoam for the diaper area, and eventually both to cover the inside and act as padding. The biggest asset was something we purchased online, the Cast Cooler. For about 30 bucks, I believe, we gained a world of comfort for Evan. It dried the cast in ten minutes and kept a steady flow of cooling air underneath. On the hottest days I'd hook this up and watch Evan fall asleep almost immediately. You can't put a price on that kind of comfort.

The past 15 weeks has truly been an adventure. It was challenging, but it's been rewarding. There were times when I thought I'd love to burn the cast as soon as it got cut off, but honestly as I sit here now I feel quite fondly for the thing. Like a good friend, it was there to support Evan when he needed it most; it's contribution, irreplaceable. The cast, the surgery, this experience, is one more gift in a long line of blessings Evan and our family have received. I am overwhelmed with love and gratitude for this moment. I am excited for the next chapter.

Evan Today

Evan is currently in a spica, full body cast, after a right hip reconstruction; one of the anomalies on his right side. The course is 15 weeks in a cast, one month in a brace, then rigorous physical therapy so he can learn to sit and crawl again then he’ll learn to walk! The cast comes off July 6th. This was a planned surgery which is always a good thing; another check off the list.

Evan has reached the minimum weight and height requirements to be eligible to receive a kidney transplant. At 21 months he is now 22 lbs. He was added to the UNOS Kidney Transplant List on June 3, 2011. This was a big check off the list!

He has an appointment with his transplant team to discuss the next steps. The biggest step is the construction of an incontinent bladder. He needs a functioning bladder before he can receive a kidney. The timing of both must be precise so a living kidney donor is ideal. His dad is a match and almost finished his donor work up. We remain positive that he’ll qualify as Evan’s donor, but multiple plans are in place in case needed.

Additionally, Evan was recently prescribed eye glasses for farsightedness. His eyes, particularly the right are crossed. The Dr. is hoping his eyes will relax with the glasses and his vision will get worse. In three months he’ll be re-evaluated. If all goes well he’ll get a different prescription and be done. If his vision remains the same he’ll require surgical intervention to detach the muscle and reattach it further back. His follow-up is at the end of August.

Developmentally Evan is behind, but he is well advanced considering the time he’s spent in the hospital. He speaks at least 35 words, uses sign language and even knows a few words in Español. His hobbies include: pointing at things and asking, “that?!”; blowing kisses; turning pages in books; playing, listening and dancing to music; throwing things on the ground; laughing; repeating what we say; meeting new people; and talking on the phone.

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.