Stehpen’s Journey – March – Pediatric Transplant Preparations

By Lindsey S., Guest Blogger

Stephen

I imagine most of the readers here at The Patient’s Voice are either adult dialysis/kidney transplant patients or their care givers. There aren’t too many pediatric dialysis patients around the country, so I thought I would shed some light on how we’ve been preparing for our two year old son’s upcoming kidney transplant.

One of the biggest differences we’ve had to overcome in getting Stephen to transplant is not the measure of kidney function but rather his body size. Stephen lost all of his kidney function well before he was even born, so instead of us watching his kidney function hoping to get a transplant before needing dialysis, we tracked his growth under a microscope hoping he would hit the “magical numbers” required by the transplant surgeons as early as possible. Before most transplant surgeons will even meet with you, your child needs to be around 10 kilograms (22 pounds) and 55 (22 inches) centimeters. For a healthy child, those numbers are a cinch to meet! But for a child with ESRD, reaching those numbers can be like climbing Mt. Everest! Children with ESRD have little to no interest in eating, with some even developing a complete oral aversion to putting anything in their mouths. And alsmost all of them have growth problems.

For our family, reaching those magical numbers meant administering a growth hormone injection in Stephen’s thigh every night beginning around 6 months of age and receiving 100% of his nutrition through a feeding tube that was placed directly in his stomach soon after birth (aka a g-tube/Mic-key button). Thankfully, our insurance company agreed with our doctor’s assessment and approved him for his growth hormone (a battle that many families have to fight) and we’ve been able to keep up with his weight by using the g-tube. We’ve been working for months on getting Stephen to eat some different foods orally, but the only consistent thing he’ll eat is ice. But once he successfully receives his kidney transplant, we expect that he’ll have some interest in food again and we can begin to wean him off the feeding tube. Without the feeding tube, he’ll be able to attend preschool with his peers without me having to worry about how he’ll get fed during the day.

Once Stephen was nearing those “magical numbers” we had to go about a process of finding a hospital for him to receive his kidney transplant. If you look at Medicare’s list of approved kidney transplant centers, there are many adult transplant centers on the list, but there are few pediatric centers. In our state of Virginia, there were only 6 centers total and none were pediatric specific. Children’s Hospital in Washington, DC, was listed, but at the time when we started this process, their transplant program was in limbo and the hospital where Stephen spent much of his first year, INOVA Fairfax, was not accepted by our primary insurance as an acceptable pediatric transplant center. So we went where we thought Stephen would get the best care possible, that was within driving distance, and that happened to be Children’s Hospital of Philadelphia (CHOP). We had also gone there when I was pregnant to seek counsel on Stephen’s diagnosis and were blown away by the doctors, staff, and facilities!

Since December 2010, we have been traveling from Northern Virginia to Philadelphia, the 160 miles, every couple of months to meet with the transplant team to prepare for the upcoming big day. Now that it’s only 5 weeks away, we’ve begun the preparations to temporarily re-locate to Philadelphia for 6 weeks post-transplant. His transplant nephrologist would like to keep Stephen in his care two times a week for six weeks post-transplant, before transferring his care back to Virginia. It won’t be easy, financially, physically, and emotionally, to be away from our home and everything we know during this time, but we know that with the support of our friends and family, we can and will get over this next big hurdle! And we’re more than excited to see what comes next for Stephen!

Comments

  1. Thank you for this blog. Great meeting you at World Kidney Day! Sherry

  2. Carter was born with esrd. He has 15% function..It has been a long journey the past two years..We are at 20lbs. He will eat very few foods and will gag on certain textures..every so often we go thru episodes of vomiting. He is on growth hormone and has been the past year. He was on peritoneal dialysis from a month old until nov of last year. In sept we had a hole in the PD tube and did 2 weeks of ABT, then in Nov we got another hole, in the mean time we were in the process of transferring from the hospital in Oklahoma to KC MO., so before our first clinic appt. there , we were in the hospital at KC with yeast infection in the peritoneal , the PD tube was removed and so far we are doing okay.. Then 2 weeks ago he had a mastoidectomy, I keep beating myself up on this because I didn’t recognize it..He had to have 100cc blood, HGB was 5, on the 13th of this month it was 10.8, Carter is my grandson, but his mother and 2 siblings and daddy live with us.. I have quit work to stay home to help care for him… My daughter has always been different, a difficult childhood, antisocial, childish..no eye contact, minimal converstion, answers the person with her when asked questions by the nurses , smart but fearful of new things..when Carter was born the nurses recognized this as Asbergers, so a blessing in disguise…and a diagnosis was made..God bless you for yor post, I am so glad I found it. Sometimes the internet can be so overwhelming with information…

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