Steven’s Story

Site created on January 18, 2013

Welcome to our CaringBridge site. We've created it to keep friends and family updated on our journey. We appreciate your prayers, support and words of encouragement.  May God bless you!

At five months pregnant, doctors told the Blohm family their unborn son, Steven Jr., would not survive.  After extensive tests and an experimental fetal surgery in California, Steve and Penny learned that their son had a large hole in his heart, probably no bladder, kidney failure and his lungs would not develop. Some medical professionals recommended they terminate the pregnancy.  When they refused, they were advised against any treatment for their newborn baby and to let him pass away after birth.

Against recommendations, Steve and Penny asked for everything possible to be done for Steven Jr. once he was born. He was given less than a 5% chance of survival but with God’s mercy and grace, Steven Jr. beat the odds!

Steven Jr. spent six months at Children’s Hospital in Omaha on dialysis and survived numerous surgeries and setbacks.

During those six months, Penny drove 160 miles from Shelby to Omaha and back every day to be with Steven Jr. in Omaha and at home for their two daughters, Sierra and Alyssa. Every weekend the five would gather in Steven Jr’s hospital room for “normal” family time.

At six months old, Steven Jr. was released from the hospital, and Steve and Penny administered home dialysis 10-12 hours every day for 2 & 1/2 years.  Steven Jr. also came home from the hospital on a feeding pump 22 hours a day.

Steven Jr. is now 9 years old.  The day before his 3rd birthday,  August 19, 2013, Penny donated a kidney to Steven Jr. at Children’s Mercy Hospital in Kansas City, MO.  The transplant has been a huge success!  Steven Jr. has spent a total of 10 months in the hospital, 3 years of kidney dialysis, 7 years of tube feeding, a dozen surgeries, thousands of needle pokes, and hundreds of doctor appointments.  To keep his new kidney healthy, he is on numerous medications and receives 65 ounces of fluid through a feeding tube each day.  He is a happy, energetic boy who loves music, sports, school and swimming!

Newest Update

Journal entry by Penny Blohm

Hello Friends,

I hope each and everyone of you had a Joyful Thanksgiving and Christmas season!  We had so much fun getting together with family and love this time of year when we take the time to enjoy celebrating with grandparents, aunts, uncles, siblings, cousins, and friends who we don't get to see often enough!

Homeschooling is going well for Steven Jr. and I.  We have gotten used to our school routine which includes regular playtime with other homeschool and neighborhood friends.  Steven has also began playing on a basketball league at the YMCA.

In addition to Steven's rejection diagnosis in 2015, his hydronephrosis diagnosis in June of 2017(pressure on his kidney from urine in the bladder), we now have a new hurdle to deal with.  At our 6 month appointment December 11, 2017, a routine heart echocardiogram came back abnormal. Steven Jr. has developed aortic dilation.  Upon receiving the news, I do what I always do when I don't understand something - I goggled it.  What I found put me into immediate panic mode because google was telling me the aortic dilation meant aneurysm.  I was devastated, panicked, and extraordinarily disappointed.  It was a Friday evening when I googled this information so I called the on-call Kidney doctor.  She assured me that Steven was going to be just fine until the cardiology appointment which they scheduled for us today, January 9, 2018.

The appointment was fairly short.  They did an EKG on Steven Jr. which came back normal.  The cardiologist asked many questions.  She told us that Steven's aorta is mildly enlarged which means that it is not big enough to be classified as an aneurysm. This was a huge relief!  She also told us that his heart is developing some thickness which is an indication that his blood pressure has been too high for an extended time.  There is no cure for the enlarged aorta but her recommendation is to increase his blood pressure medication, get him to have a consistently lower blood pressure, which should keep his aorta from getting larger. The theory is, that as his body grows, he should eventually grow into his aorta.

I am thankful that this condition can be reversed over time.  I was initially annoyed that we had to take him for the routine echocardiogram in December, but I am now so very thankful for that annoyance. If this issue remained undiagnosed and if it worsened or developed into an aneurysm that we didn't know about, it could have killed him.

To get myself through December 11 until January 9th, I had to cling to Jesus and focus on all of the examples of Gods Mercy, Grace, Goodness and Miracles that He continues to show us through Steven Jr.'s journey.  As Jeremiah 29:11 says "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

My head knows that I am not responsible for this new issue, but my heart feels very heavy and I feel responsible for this new development. When Jr. was on dialysis, I took his blood pressure 2-4 times per day. After transplant and after each improving year, I relaxed a bit and was not as diligent.  I would see higher blood pressures in doctor appointments or before lab draws and chalk it up to Steven's "White Coat Syndrome" (anxiety at medical appointments).  I would take his blood pressures upon returning home from doctor appointments for a few days.  I would always get normal readings.  The pressures were always within the higher end of the parameter given to me by the docs and I never had to notify them or give him his rescue blood pressure med. I justified the higher/normal pressures because he would not feel well when pressures were in the low/normal range.  He would be weepy & lethargic, which would contribute to him struggling in a classroom setting.  In hindsight now I realize that it was his anemia, chronic illnesses, in addition to blood pressure issues that affected how he felt and dealt with classroom stressors. In laymen's terms, I have been settling for higher blood pressures to make him feel better during times when he battles anemia and illnesses.

I probably also became too confident.  At one time I was a master at controlling his blood pressure.  When he came home at six months old with heart thickening due to high blood pressure, I was so proud at the fact that I was keeping on top of it and within a year, all the thickening had healed.  By the time he was 3, I could almost tell what his pressures were by how he acted. As time passed, I took on additional responsibilities and distractions which opened me up to not make the time to monitor his blood pressure as I once did.  Doctor Lovell, who has been Steven's kidney doctor since birth, reassured me that I shouldn't have to monitor his blood pressure like I did while he was on dialysis and that I have done a great job.

I know I can't change the past, but I can make good choices for the future.  My goal now is to get him used to lower blood pressures, while dealing with the anemia.  That's the benefit of homeschooling.  We can work at his pace based on how he feels.  If he needs a rest or sleep, he can rest and sleep.  Homeschooling has also kept him virtually illness free, which is another huge bonus! We will also continue working on his eating.  He has worked his way from a kids sized Subway to a six inch Subway Sandwich!  We are very proud of his eating and drinking progress!

Does Steven Jr. know that all this is going on about him?  Absolutely Not!! All he can think about are his Saturday morning basketball games!  He was so excited last Saturday, that he was up at 4:00 a.m. waiting for his 8:00 a.m. practice.  My how he loves sports!!

Thanks for listening my friends!
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